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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.
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
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.
“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!