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I love fall!

I love our annual trip to the apple farm, the continued but slowing scramble to farmer’s markets until they close shop next month, the cool nights and the warmth of a wood-fed fire pit surrounded by the deep and intoxicating smells that this season brings along with it. The cornstalks soon to be put out along with the vibrantly hued pumpkins, the trees’ deciduous leaves now changing in accord… it’s a sensory orgasm!

Last week seemed a bit more hectic, balancing home, family and a personal work-life in conjunction with extended family and friends for our annual Late Summer-Fall Equinox potluck. But all the work and preparations reminded me how vital it is reconnecting with others whose lives are busy like ours, whose children are growing and/or grown, and gather for one evening to celebrate the change of season, share a bountiful meal, taste new creations, revisit old favorites and maintain some deeper meaning within our lives.

A couple of weeks ago I was inspired to see BANA (Bulimia Anorexia Nervosa Association) holding it’s Global Dinner Table Conference (wonderful titled theme!) and extending efforts to educate and connect within the Ontario region with spokeswoman, advocate and eTalk journalist Ms Sophie Gregoire-Trudeau presenting a powerful personal journey through recovery from bulimia. Now as a healthy mother, wife and proponent for eating disorders she stated quite beautifully: “healing means reconstructing your notion of self, and who you are, and your connection with the world”.

BANA is one of a handful of grassroots organizations that actually carries out valuable, useful support and services instead of only allocating funds-donations and collecting data, along with having a vital partnership with the Local Health Integration Networks (LHINs) that is broadly interconnected with hospitals, medical communities, local demographics, schools and universities to align more effectively with clinicians and the broader public to reach those in need and provide support for families.

Another organization of note that has recently joined earlier this month at the “global table” is BEDA (Binge Eating Disorder Association) which can be additionally pivotal towards connecting those whose diagnosis is either “undefined” “unspecified” or completely overlooked towards the resources they need, and continue providing the educational and preventative services as well as highlighting probably the most common form of eating disorder more broadly present.

It’s aspiring to see such organizations take root and develop, gathering together as a unified front to fight an illness that has left far too many for too long uninvited or unheard to now join at “the global table” to come together!

 

 

“O Autumn, laden with fruit, and stained
With the blood of the grape, pass not,but sit
Beneath my shady roof, there thou may’st rest,
And tune thy jolly voice to my fresh pipe;
And all the daughters of the year shall dance,
Sing now the lusty song of fruits and flowers. “
– William Blake
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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

 

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

 

 

Kar Men Shreshth Kamandalu Chakra Trishoodlharta

Jagkarta Jagkarta Jag Palankarta

    Om hara hara Mahaadevaa

APF/Getty Images  Bertrand Guay

There is quite a bit of debate heating up lately, even over at ATDT parents are sharing their thoughts on this topic, regarding recent legistlation created by France lawmaker Valerie Boyer that France is passing towards imposing strict fines, even imprisonment against the proliferation and promotion of “pro-ana/mia” within websites, media images, the fashion industry and beyond that continue to hightlight clearly unhealthy anorexic/ED’d-looking, emaciated ultra-thin bodies– “legislating body weight” some are finger-waging. 

The reviews and feedback are certainly mixed, some downright misinformedstiil -and so sorely one-sided which to me only illuminates just how complex these issues are; and more importantly  how much more of this conversation and dialogue needs to keep happening and developing.

I haven’t delved into a full exploration of my opinions on this yet, but I do think while we can’t police every site, ban every image, twisted ideal there certainly is something that we are all responding and reacting to when we see someone who looks so severely malnourished, skeletal and unwell. 

As a mother of a daughter who suffers from Anorexia Nerovsa I do have an immediate heartwrenching reaction to this issue, and do believe there is not just a “personal” responsiblity but public and social conscience we all need to be connected to and address at some basic level without turning a blind-eye and pretending none of this has any impact on society whatsoever– clearly it does.

         

 

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!

 

holi

This month is such a busy month… I’m very blessed and so very happy that I’ve sold two paintings (not current work, but nonetheless- yeah!) and it was a carefree act on my end, thinking nothing would move someone to be so compelled for work that honestly doesn’t resonate for me personally right now– but all good!

Easter was nice, we are a culturally diverse family (hubby from India) so we partake in other various festivals and events, Holi (see above) being one this month too– my birthday is coming up (not telling how many candles- tsk!) and having our daughter home from residential after nearly three months of treatment is no light lot.

I love spring! New green shoots pushing forth from the ground– and the snow is finally melting here- yippee! New life, new beginnings… change.

And while our daughter is definitely on her road to recovery, this is not a easy road for her to travel– she still needs lots of love, encouragement and support.  She is also quite young, so the decision to “just do it” and fully connect both physically and intellectually to what has taken place over the past year is not all there for her to wade through and have immediate light-bulb moments and decide that today is the day she knows ED is behind her- for good.  She herself has openly admitted she “is not ready” to say ado to her tango with ED– not yet.

She has however been slowly “emptying” and “letting go” of ED– one day at a time.  A deep breath in and a very long exhale out…

“What will become of me if I let go of my eating disorder?”

“How many times have you tried to let go by hanging on?”

It doesn’t work…  and it doesn’t happen all at once.  One day, one step, one mouthful at a time.

Our daughter did something incredibly powerful a few weeks back.  She wrote a “good-bye” letter to ED and she opened herself up to share this moving note:

         ED,

      I need to leave you.  You have made me do some relapses and only made me think about shapes, sizes or weights.  I feel really bad for leaving you but it’s the only way I can stay on the path of recovery and be able to achieve my goals in life.  I will miss you a lot. 

You have helped clear my feeling of stress out and do something that makes me feel comfortable (restrict).  You have really hurt me.  My friends and family have been here supporting me, and it seems that you want to shove my parents away.  You also have not made me be able to hang out with my friends and then just isolate. 

ED, I plan to take care of myself and to listen to myself more than YOU.  I plan to become a ballet dancer and veterinarian, and enjoy my life and live my dreams.  You may come back to me when I look into the mirror but I won’t let you take my passions away.

                        Good-bye ED-

Indeed.  With the snow continuing to melt, the extended light of the days and the darkness of winter slowly turning more and more towards spring, I feel a renewed sense of Hope and Strength for our daughter’s continued striving forward towards full health, full Life.  There will be days, as there already are, that will challenge and the proverbial two steps forward, three-five steps back… but she’ll get there and we’re all right there behind her cheering her on!

Happy Spring- Happy Holi-Hai!

 

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!

NEDAW         So many great happenings during National Eating Disorders Awareness Week 2008 – hope everyone is able to partake in some NEDAW events in your corresponding local areas.  This year’s theme,  much like last year’s,  is still quite pivotal and we can all do our share to spread awareness,  gently and compassionately encourage those who need support and treatment to take those vital initial steps with our love and backing.

Reach out, celebrate all our diverse shapes and sizes, EMBRACE each other, and share our stories- spread the word, be heard, dispel misconceptions and myths that still surround eating disorders and those that suffer- change can happen even with the simplest and smallest of steps!

Laura Collins, as always, an incredible inspiration, advocate, and Mom has posted some great commentary on the Congressional Briefing for the Eating Disorders Coalition with Dr Cynthia Bulik’s wisdom- Power to the People!

 XO

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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