Those of you who have been here for a while know her as my Dear One. To many who are newer, you might have read my words and think she is my lover – but she is not and has never been, in this lifetime at least. We've decided that we've been together for at least a dozen lives, so we've likely been everything to one another at some point in time. But in this life, she is my Dear One. I have written more poetry and prose for her than for anyone I have ever called lover. For almost nine years now, she has been my mirror and my best friend.
It was at her kitchen table that our non-profit was founded. She was the one who held the entire weight of my nine-month pregnant body as I gave birth to Julie during a stormy summer night. As a midwife she has served women with her heart, body and soul. As a writer she has moved mountains with the power of her words. Together we have seen each other through birth and death. Through beginnings and endings and heartaches and celebrations too numerous to count. In the middle of night, when I needed to run into open and loving arms, there was nowhere I could have gone but to her.
And now she needs our help. Not for herself, but for her daughter Asia, who is engaged in a battle for her life with an eating disorder that threatens her survival. Like so many, Mani and her family are uninsured. Like so many, that means they exist one catastrophe away from physical risk and financial ruin. Like so many, right now they need help like never before.
I am going to post Mani’s words below, an excerpt from the letter she wrote to a small circle of close friends just a few days ago. Since then, the community has come out full force and encircled her is love and funds and prayers and energy. But so much more is needed. Anorexia is difficult to cure and the available treatment costs dearly. I ask you to read the full text of Mani’s letter and give what you can. For my dear one. For her beloved daughter. For all of our daughters.
Insurance should never stand between a mother and the treatment needed to ensure the survival of her little girl. This time, as a community, I believe we can make sure that it does not.
I am writing to you today about my daughter, Asia. Some of you are very intimately acquainted with Asia's situation, and some of you know nothing about it at this point. Here's the thing, Asia needs help of the lifesaving variety, and if you are included in this group it is either because I know that you know her and love her, or that your faith and good energy/prayers/thoughts are powerful, or that maybe, just maybe you have some connection to someone or something that may help her.
Asia has anorexia, and is in the fight for her life. We first noticed some issues with her when she was in 8th grade and took her to a therapist, which led to a psychiatrist, and so on. She was misdiagnosed, first with depression and anxiety disorder, then with bipolar disorder. Her father, sisters, and I all brought up concerns time and again about her weight and eating habits. Each doctor, nurse, and therapist we spoke with dismissed these concerns. They told us that when the meds kicked in and her mood stabilized, she would eat. Only she didn't eat.
What she did do was get thinner and thinner, more entrenched in body dysmorphia, more anxious, more depressed, more sick. Finally, after nearly two years, a couple of months ago her psychiatrist diagnosed her as having an eating disorder.
Asia is not just thin and in emotional pain, her health is in serious peril. She has a subtype of anorexia in which she not only starves herself, if she does eat, she purges. She has anxiety attacks, insomnia, her hair is thin and brittle, her nails pitted and peeling, lanugo grows on her cheeks, she has the classic “chipmunk cheeks” caused by thyroid malfunction due to the disorder, her arms and legs swell due to fluid retention, her pulse regularly registers between 40-50, and her blood pressure has been as low as 60/40. She suffers from hypothermia, her teeth are eroding from vomiting, and regularly has bouts of crushing chest pain and an irregular heartbeat.
Due to the severity of her illness, she requires around the clock supervision and her dad and I have worked together to make that happen. I lost my job after calling in so many times to take her to the doctor, therapist, grab her from school after she blacked out (she doesn't go at all now), etc… Neither of us can remember our last full night of sleep, because we are up so often checking on her, taking vitals, making her drinking electrolytes, etc… and because we are very afraid she will go into cardiac arrest in her sleep and we will find her dead.
She is fifteen years old. Right now, she is in a short term inpatient facility, her third such stay since April. They will release her tomorrow, even though she is in no shape to be home. The psychatrist there is wringing her hands. She told us last night that although she knows beyond a shadow of a doubt that Asia needs intensive residential treatment, our state insurance will not cover it until she has taken and “Failed” an intensive outpatient eating disorder program. She said, “I am afraid that if you ever want her to get better, you will just have to figure out how to pay out of pocket. If she were my daughter, I would skip the outpatient, fire her current psychiatrist and therapist, and get her somewhere that knows this disease.
Today I am going to be calling every single reputable eating disorder program in the country to beg them to take her on a payment plan until I find one that will work with us. In all likelihood, proper help will cost between $30,0000-75,000. I could care less about that, though it may influence whether or not they will allow us to make payments for many years.
If you wonder why we are not utlizing a facility in AZ, it is because they are sub-par, have terrible long term recovery rates, and anorexia has the highest mortality rate of any psychiatric illness. My daughter has stated that she would rather die than eat. There are NO current treatment options that have great recovery rates after 3 of disease onset and we are on year two. The Maudsley Method, also known as FBT, has the highest adolescent recovery rate of all therapies for anorexia, at 60-80%. This is almost double the other modalities, which are not backed by strong clinical studies. So, Maudsley it is.
If you pray for her, think of her, know anyone who works in eating disorders who may have some ideas for our family, etc… I would be so grateful. She is a wonderful daughter, and I want her back. I want her to live.
I ask you to consider giving what you can. One dollar, a hundred dollars, a card signed with love, a prayer chain directed at whatever god or goddess you claim, the power and energy of the love in your heart, resources or treatment information or stories from your own life. Yes, money is what is most needed right now, but help takes many forms and comes from the most unexpected sources.
I also ask you to share this within your own network. This crazy world of cyberspace is a powerful web of connection, and when we unleash our hearts and our words and the strength of our intentions, the most stunningly beautiful things can happen. Take a moment and share the fundraising link and the story on facebook, twitter, tumblr or pinterest. If you have a blog or online space, share this post or write your own. Take a moment and leave a comment of love on Mani's blog or twitter. Make a card and I'll tell you where to send it. Take a stand for healthcare reform so no more mothers have to face losing their precious babies because their job does not provide insurance coverage.
Whatever you do, it will be worthy and appreciated and noticed. Even one by one, our energy is a powerful thing. But with the energy of a collective force of souls focused on the life of one little girl there is no limit to what can be accomplished. This I know with all of my heart and soul.