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Tu jagmagaaye teraa deep jagamagaaye
Saare jahaan ki khushiya tere bhee ghar ko aaye
Ganga aur Yamuna sa nirmal ho tera man
Ambar our dhara sa swachh ho tera tan
Is nagar me teri jyoti chamchamaaaye
Tu jagmagaaye teraa deep jagamagaaye
Achchhe karmo se jag me naam hogaa tera
Teri aahat se buraiya lengi nahi basera
Tere marane ke baad bhee log tera naam gaaye
Tu jagmagaaye teraa deep jagamagaaye
Mit jaaye andhera jo teri dagar me aaye
Aaye kabhi na gam jo deti chintaaye
Naam amar ho tera ek taaraa timtimaaye
Tu jagmagaaye teraa deep jagamagaaye
Door karna chhuachoot mandir masjid ka jhagara
Koi mare na bhookha koi rahe na kangala
Aane waalaa kal tera naam gungunaaye
Tu jagmagaaye teraa deep jagamagaaye
–Shambhu Nath
*Wishing You a Very Happy Diwali!*
Men say the world is full of fear and hate,
And all life’s ripening harvest-fields await
The restless sickle of relentless fate.
But I, sweet Soul, rejoice that I was born,
When from the climbing terraces of corn
I watch the golden orioles of Thy morn.
What care I for the world’s desire and pride,
Who know the silver wings that gleam and glide,
The homing pigeons of Thine eventide?
What care I for the world’s loud weariness,
Who dream in twilight granaries
Thou dost bless
With delicate sheaves of mellow silences?
Say, shall I heed dull presages of doom,
Or dread the rumoured loneliness and gloom,
The mute and mythic terror of the tomb?
For my glad heart is drunk and drenched with Thee,
O inmost wind of living ecstasy!
O intimate essence of eternity!
-Sarojini Naidu
~~ Summer is in full-swing and we are finally escaping for a long overdue respite. Destined long nights, mythical and ancient sites… meditating on cliffs, dusting off the lens and capturing images that provoke and provide aesthetic sustenance. Lingering and contemplative hikes up temple steps that have been etched by devotees feet countless times before– who are we but humble and gracious guests- not the arrogant and time-constrained forceful tourist.
Foraging in sacred forests with gamelons playing in the distance, and dancing deities battling the age-old epic between black&white-good&evil ending with the balance of Life, once again, restored. Then taking what was digested of the day to a lamp lit night to write, write, write. Littering my splattered journal with poetic meanderings that have waited, sometimes it seems far too long, for a time such as this.
Life has certainly been blessed and full of positive changes lately! Our daughter has courageously turned the tables on Anorexia within the past couple of months, and is enjoying a summer filled without “fear“, vibrant, healthy and triumphant in this very moment– we are so extremely proud of her!
Thank you so very much to all of you who are a constant source of human wisdom, compassion and many who have also lent a comforting shoulder to lean on. Along with the ever gracious comrades who work with me tirelessly towards creating our monthly “healing&creative space”– which will return once again late this fall; I really don’t have enough words to do justice in this meager post to give adequate appreciation.
I am deeply grateful for the small patch of ground we continually attempt to uncover to help support those with eating disorders and their families, partners and loved ones. I hope to continue to dig a deeper and wider-reaching network that will eventually have an even greater substantial and purposeful base of resources, along with caring, intelligent and genuine individuals to be of greater service for those who continue to suffer. Patience, time and perserverance– many of us know all too well the meaning of those words, but they truly do remain at the forefront of what long-term recovery entails well after weight-nutritional restoration has been established.
As always, many additional thanks to those who continue to be of support, who listen, read the blog and email, and have allowed me this welcoming space to share our family’s Journey to Recovery– much deep love.
Wishing everyone a relaxing, peaceful and enjoyable summer! See all of you when the leaves begin to crinkle and the crispness of fall begins to fill the air.~~
–Erin Hael
Anyone involved with eating disorders knows all too well the commitment, expense, and time that treatment and recovery encompass. There are no quick fixes on this journey towards reclaiming ones’ Life back from a devastating illness that can lead to chronic health debility and even death if left untreated.
Just mention the word “insurance” to anyone acquainted with eating disorders and you will undoubtedly get a credible grunt of frustration or despair when it comes to what insurance companies “allow” for treatment and follow up care. And for those of us who have loved ones requiring the most intense level of care in either residential ED programs and/or partial-day programs for any length of time, insurance becomes yet another demon to lock horns with; and certainly not what caregivers, families and sufferers need tacked onto an already onerous battle to save someones Life.
We have had many a battle with insurance to get our daughter the care she deserves, and to push beyond the bullying that desperate parents face when told your child cannot get the medical services s/he needs until you’ve taken out a second mortgage, gone bankrupt, taken out exorbitant loans because extended coverage was denied, but by all Dr recommendations is absolutely necessary in continuing care and treatment.
The manner at which eating disorders are covered by insurance (and obtaining equal access to quality care is another needle-in-the-haystack!) is still quite crude that my blood boils when listening to parent after parent exhaustively stating the same heartrending scenario over and over. And speaking with parents and sufferers outside the US, you find some of the same- sometimes even worse.
Well, after stating all this rather negative reality, there is some hopeful news to share with the now infamous New Jersey Blue Cross/Blue Shield class action federal court case which restores my belief, coupled with the progression of Mental Health Parity, that 2009 will continue to move forward and keep chipping away towards change in improved coverage and treatment of eating disorders that is well overdue:
January 10, 2009 Horizon Blue Cross/Blue Shield of New Jersey has tentatively settled a class action pending in federal court in Newark, New Jersey involving reimbursements for medical expenses relating to the treatment of eating disorders. The terms of the settlement must still be approved by the court.
Although Horizon covered treatments related to eating disorders (primarily anorexia and bulimia), including hospitalization, outpatient treatment, psychotherapy and nutritional counseling, there were benefit limits on such treatments.
Under the settlement terms, Horizon has agreed to pay claims for eating disorders that were denied because they exceeded the plans’ maximum benefit for non-biologically based mental illness.
Horizon has also agreed to give parity treatment to eating disorder claims for Horizon insureds in the future and to enhance its appeals procedure by providing the right to select review by an eating disorder specialist of all claims denied on the basis of medical necessity.
Ring out the old, ring in the new,
Ring, happy bells, across the snow: The year is going, let him go;
Ring out the false, ring in the true.
-Lord Alfred Tennyson
Yes, it’s already December and I’m still concocting a various array of T-Day leftover meals. The latest- and hopefully the last turkey creation!- curried turkey potpie was a hit, but with one plate empty at the table.
Life for our family, once again, is on temporary halt to regroup, realign, and reaffirm former, as well as new recovery priorities-goals; and up the ante a bit to get beyond the bump-in-the-road our daughter is experiencing wrestling free (though as of late, resembling more acquiescence) from the dangerous clutches of anorexia.
Leftovers…
Ironically we were in this familiar territory the same time last year. And as a parent, when you’ve seen how far your child has come through his/her ED recovery, how hard the fight gets fought, seeing and knowing they can do it; it feels like suddenly your footing on that long arduous climb is becoming loose and weak. You’ve been tossed back down, the wind has been knocked clean out — “GASP!” Some confusion sets in, frustration, even some anger– “Damn you friggin’ (I use a word with a bit more gusto and power) ED!” It’s time to take action, as most of us know, eating disorders love the waiting-game, the delay, the postponing… we’ve already been there too.
Adolescence is a time of rapid growth and development, and a body taxed with an eating disorder at this time cannot do fully what it was meant to do normally unhindered. The reports regarding bone density and calcium loss within eating disorder sufferers are not new but it is a necessary reminder of the severity of this illness and why treatment should not be delayed, since significant changes do take place before decreases in bone structure become evident, and some of these changes can be permanent after a certain age.
Leftovers in this scenario can also be remembered as requiring 100% full nutritional support and adherence- without question, without exception. This time of year brings forth both a welcoming joy towards celebration with family and friends, but as well an unwelcome increase of stressors and worries that pose some unique challenges for those with eating disorders.
There has been a wide variety of posts and informational resources in this regard which is fantastic. One incredibly busy and committed individual interviewing as of late is Dr Cynthia Bulik, who is the director of the UNC Eating Disorder Program prompting:
“Keep your support team on speed dial and call them at any time during or after a party. Talking relieves the pressure. You’re not overburdening them. They will undoubtedly have stories to share, too.– Potlucks are your friends. Don’t hesitate to take a food you prepared that feels safe enough to you so that you will have at least one manageable entrée.– Lavish holiday spreads don’t have to be the enemy. If faced with one, channel your inner Boy Scout or Girl Scout skills and be prepared! Before stepping in line, and before getting a plate, evaluate the options. Mindfully consider which foods you’ll sample, portion sizes and whether you feel comfortable trying a “feared food.” Make a decision and stick with it!– If your treatment team has given you a meal plan stay on track so you aren’t starving when you get there.– Listen with your heart, not your head. Hear the happiness and caring in a person’s tone when they tell you that you look “so much better.” They are saying they care about you. Don’t let the eating disorder lead you to misinterpret those words in a way that deprives you of hearing that people really care about you.— Get Real! People too often have a fantasy about how “perfect” the holidays are going to be. When family members fail to live up to unrealistic expectations, it might be tempting to restrict or overeat in an effort to feel better temporarily. Try to anticipate some of the possible emotional traps in advance so you can cope (and maybe even laugh) when you encounter them.– The well-known HALT slogan works for any type of recovery. Don’t let yourself get too hungry, angry, lonely or tired. This is especially important over the holidays.– ‘Tis the Season to Forgive, so forgive yourself if you have an eating slip.– Try your best not to skip appointments with your treatment team. It’s an important time to stay in touch with people who can help.
Dr Bulik also continued with an “Eating Pressure” interview recently conducted by CNN worth viewing.
And there is an equally interesting qualitative study: “Total Control? Eating Disorders and Emotional Responses to Food” conducted by the University of Adelaide in Australia with the result podcast and interview available from CQ University’s International Program of Psych-Social Health Research Dept that looks at emotional responses to images of food presented to adults with eating disorders, and using the qualitative methodology to further measure and explore issues of self-control, food fears/responses, CBT-cognitive behavior therapy as a means to help adjust maladaptive ways of thinking and behaving. I think this could also be extremely beneficial to younger ED sufferers as well, and crucial for helping them deal more cohesively with their “fear” foods that many times get downplayed or ignored within many treatment programs by only having the patients eat the foods, or avoid them altogether in their meal plans.
And yet more leftovers, as lastly I found BBC’s-Radio4 All In The Mind Segment by Claudia Hammond insightful in regards to the variations in some residential programs and getting additional perspectives from patients who are going through the program, their personal thoughts and views. The “partnership” message from the Phoenix ED program in the UK director, Dr Thompson was also welcoming to hear in having patients play a significant role in their treatment and recovery process along with more collaborative and balanced strategies. The numbered tables that residents eat at are something quite interesting as well, with Table 1 being a level requiring most support and moving towards Table 3 with more independence, and thusly Table 2 being 50/50. I think to me what stands out is the ability to remain open to making changes and being creative in strategies, and not simply applying practices to ED care and treatment that simply don’t always work for the individual patient.
So while I’m still musing over Thanksgiving tidbits and at the same time putting up the Christmas lights and bringing out the boxes of holiday decorations, we’ll keep fighting and rallying behind our daughter to continue to move forward within her next level of recovery. Regaining some ground lost with deeper learning and strength gained (we all make mistakes and have setbacks- with or without an eating disorder!) We know we’ll get through this together and once again her place at the table will be filled when she is ready… until then leftovers may be on the menu for awhile.
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
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,
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!
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
Eating disorder recovery, like gardening, is most definitely a labor of love.
And while I’ve been gardening as long as I can remember (although when I was younger, I absolutely detested those summers in the “country” toiling, weeding and watering; the only salvation was my G-Ma’s raspberry pies- and oh, how we grumbled and complained! Such indentured servants to the land we were; little did we know the lessons being planted early on by our wiser parental-elder units indeed!) with digging and transplanting in country soil, urban community plots, studio rooftop gardens, CSA worker-share’s- you name the place, I’ve always found a way, even on a low budget, to squeeze something beneficial, tasty and aesthetically pleasing into the ground our family happened to be living on top of.
With only two years passing since our daughter was diagnosed with anorexia, there are many things we are still learning together about this illness and how to best tend-cultivate to our daughter’s support and recovery. But we have definitely learned so much since she was diagnosed, what works, what definitely doesn’t, when to move on, regroup/restrategize, and also when to let things be, step back, and also knowing when to step back in when needed. Quite like tending to a garden plot I’d say.
And I can’t but think as I’m scrambling to let the frittata cool, get the gazpacho out, toss the pasta with fresh tomatoes from the garden… we have ten or twenty arriving? ugh! Hubby’s tending the proverbial flame to finish the tandoori chicken and burgers- that some of the best lessons are learned from the garden.
__________________________________
For the garden of your daily living, plant three rows of peas:
- Peas of mind
- Peas of heart
- Peas of soul
Plant four rows of squash:
- Squash gossip
- Squash indifference
- Squash grumbling
- Squash selfishness
Plant four rows of lettuce:
- Lettuce be faithful
- Lettuce be kind
- Lettuce be patient
- Lettuce really love one another
No garden is without turnips:
- Turnips for meetings
- Turnips for service
- Turnips to help one another
To conclude our garden, one must have thyme:
- Thyme for each other
- Thyme for family
- Thyme for friends
-Jessica Prough
Have a wonderful and abundant Labor Day!
There are few individuals who truly rise to a level of integrity, experience, commitment and compassion when it comes to researching and treating eating disorders that I can honestly say are worthy of note, let alone far too few dedicated and wisely seasoned clinicians available for sufferers and families assisting and caring for loved ones to have equal and affordable access to. Dr Daniel le Grange at the University of Chicago is most certainly one of those individuals.
For parents who have younger children or adolescents suffering with an eating disorder you are probably already aware how vital early diagnosis and intervention are to restoring your child’s health. Many families and parents are unfortunately still treated as the “problem” or blamed/shamed into believing that they “caused” their child’s eating disorder, and sometimes, worse yet, doctors don’t even take seriously the early warning signs of eating disordered behaviors as well as weight loss in younger patients and dismiss the parents concerns despite the “highest concentration of most sufferers of Anorexia Nervosa being in the adolescent female population”– time is not on anyone’s side when you delay diagnosis and immediate treatment.
And treatment programs along with many clinicians still leave the family aside and ignored vs being utilized as a vital resource in assisiting and collaborating within helping their child recover, and working with as well as healing the entire family unit. This makes many of us parents quite irate since we know our children best and were the first to have noticed the drastic changes in our child’s behavior, took initiative in researching treatment options/providers, and then continue to take action, resources and advocate for our children while waiting for many in the medical community and insurance industry to finally wake up and begin implementing true evidence-based treatment strategies that work instead of constantly reinventing the wheel, over and over…
Parents, Families/Partners and Caregivers of Children and Adolescents suffering with this illness please take heart, find continued reassurance, and be re inspired by reading Dr le Grange and Dr Loeb’s Early Intervention in Eating Disorders as well as Dr le Grange’s Treatment Model for Eating Disorders in Children & Adolescents :
- Parents are a RESOURCE in helping the adolescent
- Most parents CAN help the adolescent
- Parents have SKILLS to bring to treatment
- Therapist leverages parental skills and relationships to bring about change
- FBT-Family Based Therapy is the only evidence-based treatment shown to be efficacious and cost effective
On the Centre for Excellence in Eating Disorders (CEED) website, where if you are an Australian native they are also providing FBT and eating disorder treatment study for families free for participants, which they did here in the states at the University of Chicago a few years back.
Some day Eating Disorder Treatment will be this good everywhere — until then, keep fighting the good fight and don’t give up!
-shanti
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