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leaves

 

I have a group of friends, some of us have been buds since high school, that take an annual “getaway” to the Cape Cod of the Midwest and rekindle to a cabin, enjoy great food, great sights and wonderful memories. We are an eclectic bunch, love and support each other dearly, but most of us either live at opposite ends of the globe or within different states, have families, busy careers and do our best to stay in touch via email, phone and the annual escape.

When we discovered Kate Jacobs The Friday Night Knitting Club we began to loosely refer to our own “group” of eclectic Momma’s, hip-Sista’s, and cherished Friends within similar shadows cast in Jacobs endearing novel. Some of us do also knit, but my abilities at this craft (my Finnish G-Ma I know is grimacing down… all those beautiful scarves, legwarmers, mittens and sweaters to my clumsy and pathetic scraps of endlessly funny looking pot holders, both of my girls can also needle me to blushing embarrassment! What I yield with a paintbrush, quill and acrylics makes up for that I guess) are definitely comical.

Two years ago it was impossible to consider this pilgrimage with our daughter’s eating disorder diagnosis, and everything in our lives just seemed to stand still, as if one was holding in the deepest breath, waiting to exhale.

Next fall, we’ll be approaching three years in… deep exhalation; I take the moment to do something for myself, heck even have some fun!

And it was well worth it, and probably why my body is clearly present back here in the city, but my mind is still back in Door County, appreciating those gifts of friendship and remembering that caring for oneself is just as important as caring for others.

As parents, caregivers, extended family members, and partners who support and care for our loved ones recovering from an eating disorder, it doesn’t matter if you head for the woods or take a bubble-bath surrounded by candles and peaceful solitude, what does matter is that you remember to take the time to honor and care for yourself as well.

Simple yet so easy to forget… so please remember.

shanti

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       … and how I feel about eating disorders, about the current state of our economy, the political scrapping and other such quibbles. Maybe it’s the post Harvest Moon which resembled the bounty and beauty of a big, bright pumpkin in all it’s glory bringing Ursa Major back down for Autumn hibernation and seasonal change. My ancestral forefather’s and mother’s deeply rooted with Finnic-myths describing the endeared Kontio – “dweller of the land”; such ancient stories recalling and reconnecting with one another.

 

*

*

Right now,

what she said,

what

I

said

is the size of a grizzly,

nine feet

tall

with stiletto claws swiping

at

my innards.

*

But

if

I

can

just inhale

and

back

slowly away,

time,

like a sailboat,

is waiting for tomorrow’s

wind

to sweep me

safely from this shore,

where

I

can stand on the deck,

day by day,

watching that grizzly shrink

smaller

and

smaller until it’s only

a

mouse,

easily

chased away.

 

*

*

Jacqueline Jules – The Argument

 

Juoksahkka, Maadteraahka I think of you!

 

Some of the most common events become quite significant when your child has an eating disorder, and at times worry seems to be a constant irritating leach sucking your Mom-force astray even when the coast is clear.

For the past two years our daughter has missed out on class trips due to the pernicious nature of the eating disorder. And as if heading back to school doesn’t already bring with it some added stress and anxiety for a developing young middle-schooler, these trips always take place at the beginning of the year– great idea for setting the tone and building relationships for the school term, not so great idea if your child is trying to gauge the semester and transition in the first couple of weeks tacked on with the complexity of managing an eating disorder.

For the first year of middle school this trip was a no-go. Last year also didn’t happen since she was not yet able to make food-meal choices on her own, as well as eating without some additional support, and being comfortable enough to ask for help if encountering some difficulty and parents and family were not around.

Initial diagnosis of the eating disorder, immediate hospitalization, the following year inpatient and residential treatment, along with intensive outpatient treatment; days-months of missed school, family and social life seem strangely long ago, healing does take time.

This school year is markedly different though, our daughter is actually getting a bit pissy about missing out on certain aspects of teen social life and events her friends and peers seem to do “so easily”. These are things she also did easily, without second thought, prior to the eating disorder and another positive sign that she is remembering and awakening to her former Self.

This year’s “Leadership Trip” my baby is on the road for three days of fun and camaraderie. First to camp, canoeing, rope climbing and mingling while looking at the constellations, second to the State Capital, then finishing off sliding down the plastic tubes of a favored water park, who would want to miss this?

She left this morning her bags packed with extra snacks and necessities, pre-ordered her meals (all by herself- yeah!) and wasn’t embarrassed to give an extra hug.

But my ultimate moment came seeing her classic dimpled smile!

 

The road ahead is like the road behind.
The dreams achieved revise the dreams to come.
Mind shapes world, and new-shaped world shapes mind,
As what you are steps back from what you’ve done.
The deeper you resides in its own space,
Sheltered like a yolk from wind and tide,
Filled with unimaginable grace
To wander through the paradise inside.
Ambitious girl!
Become what dream you will,
And sail across each dark, forbidding sea.
Within, the fawn will graze sweet meadows still,
Untouched by all the phantoms you will be.
-Nicolas Gordon
 

-epicself

 

Well I haven’t been blogging to an idealized expectation… but there is good reason– SPRING!  

This time of year is definitely infectious for us.  Things are blooming, the soil is deep, dark, rich and inviting (which reminds me, the compost needs turning)  and I simply can’t resist when the weather beckons and stays as wonderful as it has.  We spend most of our time outdoors when spring and summer arrive so I can only apologize for posting infrequently and sporadically.  And this summer we’ll be either vacationing in India, the Rocky Mountains, or beachin’ it on Big Sur– so even more intermittent rambles, c’est ca!

This weekend is also Chicago’s Green Festival and we’ll be heading out for the party.  Personally I can’t think of a better way of treating the family with some fun, gorgeous weather, great food and extended community company!

Wishing all of you a very Bountiful, Healthy and Happy Summer!

-shanti

                                                    Being an artist

                                     means, not reckoning and counting,

                                             but ripening like the tree

                                          which does not force its sap

                                               and stands confident

                                             in the storms of spring

                                       without the fear that after them

                                              may come no summer

                                             -RAINER MARIA RILKE-

 

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

Howard S. Hoffman

 

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

                                         Howard S. Hoffman …On Life

 

Tula Karras

 

When your child is diagnosed with an eating disorder your life changes- permanently.  There is no looking back (though you do, and weep and grieve for the child you once knew and still know lies underneath the ED just waiting to find his/her way back– and they do!) there is no denying the obvious even when this illness can completely blindside and throw you off your center until you fully understand and grapple with its complexity– and even then you can still be utterly perplexed. 

But you take action, keep your son/daughter safe, provide nutritional sustenance, comfort and support.  You find the appropriate medical care, treatment facilities and resources that will help him/her, as well as yourself,  find their way back to health, well being and continuing to work towards their full recovery– however that needs to happen- you just do it.  We’re parents, Moms&Dads, families, grandparents, cousins, all taking those measures and lending a hand because we love each other and want to see those suffering find their way back to their true selves, living their dreams, passions and finding happiness- not perfection- in what gift of our Lives we have been given.  Life is certainly not an easy journey, and growing up, becoming an adult, raising a family, fumbling through difficulties– these are all illuminating lessons to help bring us back to grace and compassion, wisdom and understanding.

Something within my own inner perspective and thinking is having a bit of a snag though.  Maybe because I know how damn hard it is to wrestle with an illness our daughter was diagnosed with over a year ago.  Knowing how hard she has worked to get to where she is now, how much more persistence and vigilance she will continue to have, especially now that she is fully discharged from the eating disorder program she has been intensely involved with for several months, and facing a culture and society that seems to be ironically having increased insecurities, issues and numbers of individuals (especially within older adult populations) with “disordered eating” patterns and behaviors, which to me on the outside look and behave just like our daughter did prior to her being diagnosed with Anorexia Nervosa. 

There is this surreal sensation that comes over me when I briefly skim over an article in SELF Magazine that highlights a partnered survey studythat was done in collaboration with Dr Cynthia Bulik and the University of North Carolina that states that “3 out of 4 American Women have disordered eating” and the magazine survey whose participants numbered over 4000, and probably still counting on both the survey, forum and follow up, continue to show an increase in disordered eating patterns and ranges of destructive habits that clearly as Dr Margo Paine boldly states exemplifies, “Dieting is a national pastime for women” and “as a society, we don’t see the problem“.

The survey also goes further into describing additional categories that 6 out of 10 (1 out of 10 have eating disorders) women who are categorized as “disordered eaters” describe themselves into specific subsets:

 

* Calorie Prisoners

* Secret Eaters

* Career Dieters

* Purgers

* Food Addicts

* Extreme Exercisers

 

Of course, none of these descriptors are new.  But while some studies and stats have been pointing towards an increase of younger individuals being diagnosed with eating disorders, which may indeed be on the rise, though it’s always difficult to know whether we are only getting better at earlier diagnosing and intervention; and if some of the outcry and attention to the issue is creating the continued awareness, discussion, research and treatment standards.  But this survey, as some previous others, is showing the age range to be in the adult category of a 25-45 year old female base, and from what I’ve read in some previous studies, this seems to be more consistent and increasing if you are to follow the conclusions.

Yes, I’m perplexed and even angry.  I don’t want to see anyone needlessly suffering with any disordered eating behavior(s) that can have even the subtlest of impact upon ones’ health- period.  But I also have another irritating irk in thinking about the continued impact these findings, if they are showing continued rises in eating-disordered behavior have upon our youth and young adults who are watching, reading, and taking in this information too.  What, if anything does this ultimately translate to and what can be done to counteract this deranged preoccupation with dieting, body-dissatisfaction, and just overkill of the human body? When will the craziness stop just long enough to take a step back, breathe, and find acceptance and compassion for who you are as you are being enough, being worthy– because we all are.

And our kids need us to model and reinforce these strong capabilities and common-sense practicalities.  When I see a book titled: My Beautiful Mommy I think this is a joke, right? But I find that it’s written by a plastic surgeon, and really set on promoting this “upkeep” ideal while cunningly proclaiming under a guise of “help”.  Are we so far gone into our self-absorbed psyches that we are so easily swayed and coerced into finding this worthy of publication to begin with? Apparently so, as the book is being sold and bought, joke or not– some are taking the bait and seem to be biting hard, though not into much that will keep one nutritionally and mentally stable.

Our daughter has to not only find safety, stability and assurance within her home environment, but the world outside as well.  And this rant of a thread I’ve lowered myself to in this post just proves what an apparently obnoxious mother on a mission I am (imperfections and all- silicon free and able to eat minus fear thankfully) to keep my daughter moving towards a healthy, happy and internally sustained recovery and passionately what that means to me.

Ladies and Gentlemen, can this insanity please begin to find it’s way back in the hole from where it came?  Like a fire out of control, can we begin to find some means of putting this insatiable flame to some simmering rational end? Will these studies and polls just continue to bloom, boggle and frustrate so many of us, while invoking the opposite within others to think less of themselves, and to possibly court a potential ED, especially for those who are either biologically, physiologically and/or genetically predisposed and vulnerable?

To continued Health, Strength & Insight for us all.

Kar Men Shreshth Kamandalu Chakra Trishoodlharta

Jagkarta Jagkarta Jag Palankarta

    Om hara hara Mahaadevaa

         

 

Some incredible individuals and parent advocates have been hard at work the past two days in Washington working with legislators on Capital Hill for the annual Eating Disorders Coalition Lobby Day to push forth further measures and legislation in the continuation to further progress within treatment, research, prevention and education of eating disorders. 

This is vital and necessary work.  I for one am so very grateful, since I was not able to attend, for all of these individuals who have committed themselves towards improving the lives of those affected by this devastating illness and the families that are doing so much of this work solo, without much support, treatment resources, and clinicians adequately trained to best help their loves ones. 

Thank you EDC and its sponsors, Ms Laura Collins— you are the best!

 

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