Light Morgan's Candle on Christmas 2017

Christmas is upon us. A time for rebirth of our faith and hope for the future. We are reminded so vividly of the very first Christmas present... a parent’s love for their child. 

Time has marched on as it does and has done its worst. And yet once again, I am asking you to light a candle on Christmas Day.

Last year on Christmas Day, candles were lit literally around the world… California, Oregon, Indiana, New York, Virginia, Florida, Oklahoma, other states and of course, our own beloved Texas.  Even Germany, England and Australia checked in and showed candles which burned brightly on that day bringing the light of love and hope to an otherwise darkened heart and in remembrance of my beloved daughter, Morgan. 

The journey after my beloved daughter, Morgan was taken on October 30 2016 has been unexpected, unforeseen and draining. And in many ways, has just begun.  

At Morgan's "Celebration of Life," when I spoke, I said that she had "The Heart of a Lioness and the Soul of a Warrior." And yet after that time, I came to grips with the reality that my anguish manifested itself in a barely controlled internal rage. I instinctively knew that unless I got very busy addressing that rage, keeping it at bay, it would consume me.  And in that rage, or despite that rage, a path began to be revealed. My soul was revealed and its purpose was made clear. I now firmly believe that we are subjected to the trials and tribulations in life to not only test our will, but to groom us, to prepare us for an ultimate challenge that could by its immensity, otherwise break us. However, each and every day is a challenge.  A challenge of the heart.  A challenge of the soul. 

2017 saw the birth of The Morgan Foundation. My daughter is dead.  And “business as usual” is not acceptable. I have found that the eating disorder industry is a mess of self-interest, silo mentality and provincial thought processes with very little innovative thinking.  They are putting a “my little pony” band-aide on a compound fracture.  That is not acceptable. 

So this past year, a few television appearances, producing three part radio shows on eating disorders, TEDx talks, writing white papers and blogs, helping a number of young people get back into treatment and now, pursuing legislation (through political advisors) to amend the Texas Organ Donation law to include tissue and other biologic material.  So, why is this important?  These materials from people who die as a result of mental illnesses can go to UT Southwestern and other research institutions for study and research into not only eating disorders but all mental illnesses.  And that is only the first step. 

That rage has been controlled by my soul.  And I have given myself over to let events come to me on this path.  And yet, I will never give up.  I will never relent. There is too much work to do… too many lives to save. And the mission that Morgan started as set forth in her journals will be carried forward by her foundation.

Morgan’s Christmas gift to me last year is repeated again this year and will be repeated every year … that is a child’s unconquerable, unstoppable, unconditional love for her daddy.  For truly, if a parent's love for their child is the very first Christmas gift, then surely, a child's love for their parent... that candle of life, burning so brightly in a parent's heart and soul is the perfect way to say "thank you" for that first Christmas gift.

Once again on Christmas Day or Evening, 8 weeks and one year to the moment she left me, I will light a candle in Morgan's honor, will recite the Lord's Prayer and will look to our tomorrow's with hope, with faith, with strength, with resolve and with love.  

I feel darkness and anguish gripping me as it never has before. And yet, I still pray, I hope for one brief moment, one silent moment, I will find peace.  I urge all of you for just one perfect moment on one silent night...not just in your head, but in your heart and in your soul, rejoice that you are loved and that you love others. Hug your children, tell them you love them, and know, know for an absolute certainty, that the love you feel is unconditional and all powerful. 

One candle to light the way.  To illuminate the darkness.

And Sometimes ... an Angel Appears

This year will be the second Christmas since my beloved Morgan was taken.  And the pain is deeper this year.  I believe that for those of us who have had a beloved child taken from life, the first year we largely live in a state of shock.  It is almost as if we cannot believe it happened.  It is only after that one-year anniversary that the permanence of the loss hits.  And just when you think a scar on your heart cannot increase in size ... it does.

Well, the Holidays are now upon us.  Despite getting the Christmas tree, decorating it, going to several Holiday related shows, decorating the place with poinsettias, setting up a box for toys to take to Children's Medical Center ... this month has been more of an overwhelming reminder of who was taken and the pain that was gripping me.  I was fighting that depression monster every day and for the first time in a long time, I felt that monster was winning. However, it seems like in our greatest hour of despair, when we need a sign that our soul is still alive, the unexpected happens and a divine hand is extended to lift us up.

I received permission to put a large, decorated box in the lobby of my complex. Along with The Something for Kelly Foundation, The Morgan Foundation is going to take donated toys and stuffed animals to the Children's Medical Center. So, here it is, December 12 and I am talking with some of the management staff, when suddenly a gentleman probably in his mid-30s walks up and hears what we are talking about. He then jumps into the conversation and says, "Holy Cow.. I have a good friend who has a room full of stuffed animals that are new! You are going to need a bigger box!" Of course, that made me feel like something good is still happening and a number of kids will have more than they thought at Christmas.  And  yet, even then, I did not necessarily feel my soul being uplifted.

Then, the divine happened.

He the said, "By the way, if you know of any young people in the building here, bring them in front in about 10 minutes. I have friends who are firefighters who are bringing over two fire trucks." We stood there for just a second, and someone asked him why they were coming.  It was at that inopportune time that I got a phone call and had to step away for a moment.

As I came back, the two fire trucks were in front of the building ... lights on, wheels chocked. I talked to a few people who were standing nearby and then, I see this young boy ... he couldn't have been more than 10 years old or so. I looked at Shawn, one of the management people. He pulls me aside and said that they were just told that this 10 year old boy has an incurable disease and will be probably be gone in a few months. Naturally, my eyes teared up right away as I knew the pain which lay ahead for his parents.

And yet, as I looked at this boy, who knew his time was going to be short, he was so animated! He was laughing, waving his arms, putting the fireman's helmet on, he worked the siren, and a joy, a sweet, innocent wonder just emanated from him.  All I could do was stand there and look at him.  His hair neatly combed, his face absolutely glowing.  His smile was this incredible, pure expression of the joy and love that surely must have been in his heart.  There were about 6 firemen around him ... most had tears in their eyes and tried to look away so the boy would not see that. And in that boy's presence... you could feel a divinity at work.

That boy could not possibly know the gift he was giving everyone on that day and at that time.  A gift of strength, of love, of courage. A gift that reminds us of the incredible beauty that exists within the soul.  I recall Shawn saying how it was so unfair that sometimes the best ones are taken so young.  And then a few words came to me and without a second thought, I said, "Well, maybe God needs him more than we do right now. And look around, his soul will always be with us."

I know that for obvious reasons, this experience was put before me.  And for those who believe in Angels on earth (as I do), I have no doubt that I was afforded a brief glimpse of an Angel.  I was given a reminder of the path I surely must remain on and renewed strength to carry on with Morgan’s mission.
 

This incredible gift, the brief glimpse of this child, this Angel was surely the best Christmas present a grieving father could possibly receive.  And my suffering soul is quieter, is more at peace and has renewed strength to carry on the battle.  In keeping with The Morgan Foundation’s mission … It’s about saving lives … One Precious Life at a Time.

A Hope for the Future ... Or Naive Pipe Dream?

In past postings, you have read of discontent with the eating disorder industry, discontent with the manner in which this insidious disease seems to be downplayed by society and frustration with fathers or other persons who do not invest themselves to act proactively.

As a community and industry, we seem to be reactive, to trumpet the latest purported "breakthrough" with whichever form of counseling seems to be in vogue, while embracing the ever increasing number of pharmaceutical "solutions" designed to address the symptomology of this disease.

Certainly, counseling will always be a very important part of the equation to combat the disease.  At yet at the same time, we must find a way to better empower those who are suffering from this disease so that they feel like they at least, in part, control their own recovery.

The following proposal is certainly not designed to be a "cure all" nor an all encompassing answer to the complexities of eating disorders.  But, it may be a bold, new frontier different than prior limited trials of vaguely similar types of therapy which were not even given an opportunity to establish a toehold in the eating disorder industry.

In any event, The Morgan Foundation chooses to explore this frontier... no raising money for more counseling on the back end, no flowers, no butterflies, no rainbows all of which merely put a band aide on a broken leg.  We choose to be bold.  We choose to dare. And if we initially fail, we choose to try again.  We are the Storm.

One Year ...

One year. 12 months. 365 days.  8760 hours. 525,600 minutes. 31,536,000 seconds.

How do we measure a year?

For some, we look back and realize that a year has seemingly dragged by with the droll slowness of watching paint dry.  And yet, in other ways, we look upon that same period of time, we blink our eyes, the passage of time has transported us recklessly ahead at the speed of light and we wonder where that time went.  When we break down a year into months, we see the number 12, a number that is relatively small and easily understood. But, when we break down a year into seconds, the thought of over 31 million measurements of time seems daunting and overwhelming.

For a parent, when  their beloved child is taken from life, the shock, the anguish to the heart, the mind, and the soul is incomprehensible.  As that first year elapses, a parent looks back upon the year wondering how fast that year flew by.  "It only seems like yesterday!  I remember her incredible smile and laughter so vividly!" And at the same time, as those 31,536,000 seconds elapse, a parent looks back upon that time and feels each second slowing ticking away as if each second was a small cut to their body, their life blood dripping with each cut, feeling the pain with each passing second... and dreading the seconds to come. Tick ... Tick.

With eating disorders, when a child or loved one is taken by this insidious disease, perhaps the best part of our heart is taken as well.  Their lives are not extinguished quickly.  The process is slow and painful. Tick Tick. When the doctor quietly says, "She's gone." In a blink of an eye,  you feel, you know the best part of your heart has died as well.

Naturally, all doctors and counselors look a parent squarely in the eye and say, "It is not your fault.  Parents are not to blame."  The eating disorder industry is very quick to point out that parents are not to blame.  My reply would be, "Have you had a beloved child ripped away by this damnable disease?  I have."  And no matter what you are told, or what the literature states, you always question and wonder if you could have done more, and with perfect clarity in hindsight, you come up with all of these wonderful, alternative ways you would have changed up the treatment plans or programs who tried to save the life of your child. You also know for an absolute certainty, that those thoughts will be part of who you are until your dying day, each and every day. Tick... Tick.

And the only remaining issue is, will those thoughts destroy you ... or will they fill you with this incredible resolve and strength.  Besides Biblical references, there are at least two inspirational writings that I reflect upon in times of need.  The first, from Dylan Thomas states, "Do not go gentle into that good night, Old age should burn and rave at close of day, Rage, Rage against the dying of the light."  The second, from President Teddy Roosevelt states, "Far better it is to dare mighty things, to win glorious triumphs, even though checkered by failure, than to rank with those poor spirits who neither enjoy nor suffer much because they live in a gray twilight that knows neither victory nor defeat."

A few months before Morgan was taken, someone was talking with her in our apartment.  It had been a particularly difficult day, the eating disorder demon was living strongly in our place and I felt old and worn out.  This person told Morgan, "Morgan, can't you see what this is doing to your dad.  He looks broken."  I then overheard her voice with clarity, strength  and perhaps even some anger, say, "My daddy is not broken!  He will never break! He is strong and can survive anything!" And so we shall.

Many people have approached us expressing their admiration for what we have done in the past 365 days.  They wonder how we could have done so many things in that time frame and they openly say that they do not believe they could have reacted as we have. However, it is as if the work we have done, what little there has been done, was not the result of a conscious decision.  It was not a calculated choice on our part. It is simply the outward manifestation of a soul's purpose and mission.  That purpose manifested itself in the soul of an incredible young lady and the mission was set forth in Morgan's Journals and reflected in the outpouring of love we received beginning 365 days ago.

And so, today is not an "Angelversary."  There will be no flowers, no butterflies, no rainbows no unicorns in this posting. Be sad or sorrowful for awhile if that is what your heart needs. I know I certainly am sad.  There is not a day that goes by that I do not think of her and miss her.  She was my "twin." Tears come and will continue to come.  But, in that sorrow comes additional clarity.  I now truly  and completely understand what Morgan meant when she said, "My daddy is not broken!  He will never break!"  Morgan was not talking about my physical body. She was not talking about my intellect. She was talking about my soul.  Perhaps she sensed it. Perhaps she knew I needed to get out of my own way and let my soul find me and its purpose made clear. And so, it was.

On this day, inspiration is revealed.  Inner strength continues to grow. We have a plan in place.  We have some incredible partners and supporters who share our vision. Eating Disorders absolutely did their worst.  And yet here we stand, stronger, more resolute than ever.  The Army of Warrior Angels is restless. And, so too, I hope the Army left here on earth just as restless and ready for action.

The Heart of a Lioness and Soul of a Warrior.  Do not just let them be words.

We are coming. And we will save lives ... One Precious Life at a time.

Anorexia ... Like Bulimia Except With Self Control

On October 2, 2017, on-line retail giant Amazon advertised for sale, a black, hoodie sweatshirt with the following words, emblazoned in day-glo pink, "anorexia (an-uh-rek-see-uh) Like Bulimia except with self control." Apparently, it has been listed off and on since 2015.

This follows on the heels of another "hilarious" t-shirt for sale on Amazon which reads, "I have an eating disorder, I'm about to eat dis order of fries, dis order of nachos and dis order of wings." And of course, we must start them young.  Amazon lists a baby bib on sale which simply states, "I beat Anorexia."

Finally, Amazon still lists a hoodie and a number of sweatshirts which read, "Got Anorexia?" (a parody of the old, "Got Milk?" commercials).

Predictably and understandably, the eating disorder community, and by this I mean the various foundations, groups on Facebook and other social media sites and parents' groups wrote various emails to Amazon, threatened boycotts, the internet print media picked up the angst and published a number of articles on the insensitivity of the message.  Again predictably, Amazon pulled down the offending hoodies from its website.  And yet, as this blog is being published, we still await Amazon's public apology, a statement confirming all revenue realized from the sale of the clothing will be donated to eating disorder foundations and a commitment to greater education and research of this disease. Don't hold your breath.

After the anger and “strongly worded letters” to Amazon, and after the offending item was removed from its site, the eating disorder community was apparently placated and has focused its attention on other matters.  They pat themselves on the back for a job well done and move on.  However, in reality, it is a job not even half done.

Does society treat other diseases with such a cavalier attitude?  Cancer? For the next three weeks, we are going to see bands of women dressed in hideous shades of pink parading on our streets reminding us of breast cancer. Heart disease? Leukemia? HIV?  Why eating disorders for such derision?  23 people are dying every day as a direct result of eating disorders.  Where is the outrage?  Where is the corporate responsibility?  Why isn’t the eating disorder community up in arms regarding the fact that society today has not invested itself to save the lives of 23 people a day? Perhaps  the very uncomfortable answer can be found by the eating disorder community by looking into a mirror.

In early November, the National Binge Eating Disorder Association is hosting its national conference in Brooklyn, New York.  It has partnered with the larger National Eating Disorder Association for this event.  Its main sponsors include Monte Nido & Affiliates (eating disorder related), Oliver-Pyatt Centers (eating disorders), Eating Recovery Center, Metro Behavioral Health Associates Eating Disorder Treatment Center.

And yet, ten of the Fortune 100 wealthiest corporations in the United States are based in New York. According to Forbes, the top three most prestigious law firms in the United States are all located in New York City.  Six of the top 35 wealthiest foundations in the world are located in New York City.  New York City is home to some of the most powerful persons and companies in practically all industries.  And what do all of these entities have in common?  None are participating or are listed as sponsors for the BEDA event …and never have been.

Then there is the larger, National Eating Disorder Association which is based in Manhattan.  At their 2016 national conference, their top-of-the-line gold sponsors were listed as; Center for Discovery, Eating Recovery Center, McCallum Place Eating Disorder Centers, Rosewood Centers for Eating Disorders.

The Academy for Eating Disorders, a global professional association comprised of doctors, professionals, research scientists, and counselors held their annual conference, the International Conference on Eating Disorders in June 2017 in beautiful Prague, in the Czech Republic.  Their sponsors?  Again, all eating disorder related entities.

The point?  Are eating disorders this deadly disease taking the lives of people every 62 minutes or not?  Do eating disorders have the highest mortality rate amongst all mental diseases or not? We know the answer to those questions. This disease does not discriminate. It impacts people across socio-economic, racial, and national origin boundaries. It is the perfect killer. And it appears as if the eating disorder industry is fully content to stay within its own shell, to not wander outside of its protected silos, to not bring, kicking and screaming if need be, companies, foundations, law firms and corporations which are not on the surface, related to eating disorders into the fold. If the eating disorder industry approaches the wealthiest foundations in the world and are told, “no,” are we content with that answer and go away? Or do we not understand that “no” can mean, “not yet,” or “try again.”

These points apparently have been lost or not explored and the eating disorder industry remain insular and largely ineffective ...  with one notable exception.  Amongst all of the eating disorder foundations, community and industries, I could only locate one instance where one foundation understands that we must find growth outside of the industry. This past May, I had the privilege of attending the Ninth Annual East Coast Gala for Project HEAL.  Some of their sponsors included; Johnson and Johnson, the Fusion Education Group, and The Liebhamer Family. In California, Project HEAL enlists the support of Arianna Huffington and San Francisco 49ers president, Paraag Manathe. On line, Project HEAL states that it has reached out to business, social, and thought leaders in Silicon Valley. Project HEAL was started by Kristina Saffran and Liana Rosenman who met while they were in treatment.  Both of these exceptional women are under the age of 30, and despite not having decades of business experience to call upon, they have wisdom far beyond their chronological years and have clarity of vision. They obviously see that change in the industry is necessary and are working toward this.

So, we will remain asking where are the Amazons, the ebays, the Microsofts, Apples, and American Airlines? Where are the major law firms? They certainly have employees who are being ravaged by this disease. And yet, they, like our politicians and society in general remain on the sidelines passively watching this disease repeatedly win this macabre Game of Death it plays with us.

The eating disorder industry and community can no longer be content with merely writing “sternly worded letters.” We must learn to “think big” and to “act big.” We must push for the incredible power and wealth of the industrialized world to support us.  We must learn to think outside the box, to show these corporations that it is in their employees’ best interest to embrace the eating disorder industry and our efforts to stop the spread of this insidious disease.  Until we do this with strength and conviction, we will remain a punch line for jokes that are displayed on sweatshirts and hoodies.

A Call to Arms ... Dads, Where in the Blue Hell are you?

In society today, we have "Silver Alerts" to notify communities when an elderly person goes missing. Of course, the "Amber Alert" is well-known when one of our children is missing. When contemplating the state of the eating disorder industry and community, perhaps the time has come for a "Dad Alert."

First, if you are a loving mother of a child or are the wife or female significant other who have loved ones who are afflicted with an eating disorder, my heart and whatever strength I have left goes out to you.  Having said that, this article is not for you.  You may go back to your regularly scheduled program. Do not pass Go, Do not collect $200.00.

Dads, this article is directed at you with a very simple premise ... Where in the blue hell are you?

A few months ago, the movie, "To the Bone" premiered and is still listed on Netflix. Previously, I had the opportunity to meet the writer/director and lead actress of this film at a Project HEAL event in New York City. The movie starred Keanu Reeves as the primary recognized Hollywood actor. Thus, on the day it premiered, I was cautiously hopeful that at long last, eating disorders would be portrayed as the insidious disease it truly is. I also hoped that at long last, a father would be portrayed in the movie as a person with depth, substance, emotion and compassion. How naive I was.

The father in the movie, who is on spouse number two (who from this point forward will be referred to as "The Sequel"), is portrayed as being an absent, non-caring father. His daughter is kicked out of a program for being non-compliant. Is he there to pick her up? No …  even though she is staying at his house. Is he there to greet her, talk to her, embrace her? Uh, no. The Sequel is though and blathers on with triggering language. Rules of the house are discussed and "comply or leave" threats are made by ... the father? Uh, no. When decisions are made to have the actress enroll in a "revolutionary" new treatment program, is the father there to participate in the decision? Uh, no. When a family group counseling session is held, the actress's mother shows up with her wife from out of state. The Sequel and the actress’s step-sister are there. Is the father present? Uh, no. He has a business meeting. He cannot even attend via Skype. This “revolutionary doctor” gives up on family counseling from that point forward. When the actress abruptly leaves that program, goes missing and ends up at her mother's house out-of-state, is the dad concerned enough to be portrayed as having made telephone calls and inquiring as to her whereabouts? You know the answer. Finally, when the actress returns to her dad's house because she knows that living in a wigwam outside of her mom's house and being fed with a baby bottle "may" just be a bit much, is the dad there to greet her at the airport or upon her return to his house, embraces her and expresses his love for her? Yeah, right.

Now, I understand this movie was supposed to be loosely based on the writer/director's life. More's the pity. To parade the dysfunctionality of her father onto the screen though does nothing to advance father's rights or incredibly important role in the eating disorder industry.

I recently screened another movie on eating disorders to be released. One father who never appeared in the movie was portrayed as an alcoholic. The two fathers (or step-fathers) who did appear had an air of subservience, of little strength and limited insight into the disease. At least they were portrayed in this movie. And my initial response was … anger. Once again, dads being undermined and disregarded. But then, the harsh reality hit me squarely between the eyes.

And that harsh reality is that these movies are portraying the real life perception of society toward men and fathers in the eating disorder recovery process.

If you review all of the eating disorder foundations, projects and communities on the internet, you will find that the vast majority are female dominated. You will see rainbows, and flowers and butterflies. You will see freshly scrubbed young, mostly white female faces. You will see messages of "I recovered. I'm ok and you can be ok too." You will see groups, both closed and open on Facebook being numerically dominated by mothers and women.

When doctors, counselors and persons employed in the eating disorder industry talk with family members, they are used to the point of contact being the mother. At family group counseling sessions with hospitals and residential programs, the mothers do the vast majority of interaction while the fathers who do attend for the most part, sit in stoic silence.

In a 2014 paper published on the Eating Disorder Hope website, you will find the following statements, "Unfortunately, many women have not had the opportunity to experience an emotionally stable or healthy relationship with their father due to various circumstances, including:

·       Divorce

·       Abandonment

·       Neglect

·       Emotional detachment

·       Substance abuse

·        

If you have found this to be true in your own life, it is important to understand that you are NOT at fault for any discord between you and your father. [their emphasis]." (A statement about which I do agree.)

“Even if your relationship with your father is irreparable, you can still heal yourself. Where you may have lacked nurturing care from a father, you can learn to give to yourself and through relationships with other people in your life who are positive and supportive.”

Granted, the same paper also stated that a healthy relationship with a father was crucially important.  Yet, imagine the outcry of the eating disorder industry if the same remarks had been made about the mother-daughter relationship! People would be burned at the stake.  People would be shuttered away in the same warehouses nationwide now housing Robert E. Lee statues.

So, as dads … what do we do?

In the movie, “The Empire Strikes Back,” in teaching a young Luke Skywalker, the Jedi master Yoda, states, “You must unlearn, what you have learned.”  In short, that tidbit of wisdom means that some of the knowledge you may have previously learned may not be true and could be impeding your ability to learn and grow.  The days of being the “strong, silent type,” must end.  Dads, you MUST articulate.  You MUST communicate.  You MUST emote.  You MUST be transparent and open in your thoughts, words and deeds with your beloved child during their greatest time of need.

Numerous research papers indicate that a healthy father - daughter relationship raise women's chances of developing self-reliance and confidence and is a crucial part of the eating disorder recovery process.

You do not have the luxury of standing on the sidelines of life while your child fights this insidious demonic disease.  You also must know that the demon will be lashing out at you through your child’s voice, deriding you, trying to run you down, trying to separate you from your beloved child or loved one.  That doesn’t matter! You MUST be strong.  You MUST be smart.

If your father did not communicate with you in that manner … tough!  You do not have to be, “that man.”  Show your beloved child that it is acceptable to show emotion [especially other than anger].  Cry in front of your child.  Smile, laugh, live.  In showing all emotions you are not showing weakness … you are showing strength and self-awareness.

Talk to the doctors and counselors.  Research and study this disease gentlemen.  This disease is trying to rip the life from your beloved child.  It is your greatest, most deadly enemy. If someone broke into your home with a gun in hand, you would fight to the death that person to protect your child. That is exactly what this demonic disease is. This is a fight to the death. Do not doubt that for one second.

Gentlemen … the ball is in your court. Change, evolve, become self-aware and communicate. Or, if you do not, the consequences will be deadly.

The Warrior Angel Army Grows ... and We Weep.

Over the course of the past two weeks, I have been made aware that two more lives were claimed by the Demon... and two more families were victimized and have been left in unspeakable pain.

The most recent, a beautiful 16 year old girl in England had her heart stop in the middle of the night after fighting bulimia for four years. She is described as vivacious, free-spirited, intelligent, charismatic and deeply loved by her family and friends.  She befriended the vulnerable and gave to others, while this disease was slowly taking from her.

The other "Bright Light" was a beautiful 25 year old young lady who resided in Maryland. She studied biology at Stevenson University and graduated summa cum laude in 2009. She was attending Central Washington University in her first year of graduate school and qualified as a runner for the Boston Marathon.

You may think it only happens to teen-aged girls.  It doesn't.  In October 2016, the same month the Demon claimed my daughter Morgan, it took the life of Dr. Kamala Dansinghani.  Dr. Dansinghani was 44 years old, had two daughters, and a life on the surface which was well-blessed. She was the salutatorian of her high school class.  She was valedictorian of her graduating class at Dartmouth University with a 4.0 grade point average. She graduated with a medical doctorate and a masters in public health from Harvard Medical School.  And in October 2016, in a yoga class, she collapsed and never regained consciousness.

Then there is Christine DeMasse of Newtown Square, Pennsylvania.  She was 39 years old when the Demon claimed her.  She graduated from Rutgers University.

One of the many overlooked, unexplained characteristics of this disease is that it tends to impact some of the brightest and best of our time. More often than not there is a common thread that runs through, ties and binds together the obituaries of its victims, that is, these souls are usually intelligent, driven, intuitive, compassionate, multi-faceted with diverse interests and possessing an inquisitive nature.  So too are they stubborn and confrontational.  More often than not the disease does not claim as victims "... those poor spirits who neither enjoy nor suffer much because they live in a grey twilight that knows not victory nor defeat." (President Theodore Roosevelt)  The Demon goes after the upper echelon of our society almost as if it intuitively knows that its victims have the greatest potential for achieving great and wondrous deeds.

And so, through our grief, we must be resolute.  We must find strength, wisdom and courage to fight for those victims, those who are added to this Army of Warrior Angels.

There are no words of wisdom in this posting.  Maybe there are no words of wisdom in any of the prior posts either.  But, on this Labor Day weekend, I am reminded of the inspirational words of the late Jim Valvano, the former coach of North Carolina State who succumbed to cancer in 1993.  At ESPN's Espy Awards that year, Coach Valvano announced the start of the Jimmy V Foundation for Cancer Research.  In his closing remarks that night, he stated, "I urge all of you, all of you, to enjoy your life, the precious moments you have.  To spend each day with some laughter, and some thought, to get your emotions going. Cancer may take away all of my physical abilities.  But, it cannot touch my mind, it cannot touch my heart and it cannot touch my soul."

So too, we victims that the Demon intends to leave to mourn, to have our grief slowly take our lives as we are consumed by this unspeakable anguish, we will not succumb. Our souls are intact.  Our hearts are strong.  We will lead the battle to save lives. Our Army of Warrior Angels expects and demands nothing less. And nothing less will we give.

Insurance Industry - In League Behind the Mask (Part Two)

The Mask

"Look ye, Starbuck, all visible objects are but as pasteboard masks.  Some inscrutable yet reasoning thing puts forth the molding of their features.  The white whale tasks me; he heaps me. Yet he is but a mask. 'Tis the thing behind the mask I chiefly hate; the malignant thing that has plagued mankind since time began; the thing that maws and mutilates our race, not killing us outright but letting us live on, with half a heart and half a lung.

     Gregory Peck as Ahab, paraphrasing Moby Dick by Herman Melville

So too, do eating disorders plague humankind.  They are just the most recent manifestation of that inherent evil assuming the guise of a disease which in prior times may have been known as the Spanish Flu, or the Black Plague or the Ebola virus. That inherent evil has but one goal, to strip away life and leave a wide swath of pain, anguish and destruction in its wake.  That Demon, that inherent evil hides behind a mask disguising its true nature.

Impact on the Patient and Family

After eating disorders took Morgan's life last October, I read through her journals. These journals were written while she was in treatment in various residential programs throughout the United States. Not surprisingly, insurance coverage had a tremendous impact on her psyche and outlook on treatment.

We had some of the "best" insurance possible ... allegedly.  Group plans through United Behavioral Healthcare and Blue Cross.  These companies have contracts with most of the residential programs ... at least those who have not yet made the decision to no longer accept them because of numerous issues with billing, approving treatment, cutting authorized payments and lack of communication.

When a person turns 18 years old, they are considered an "adult" for most issues and as such, the patient must be advised of the status of insurance coverage during treatment. Imagine a person fighting for their life, their bodies slowly deteriorating, their brain deprived of nutrients and yet, focused and hopeful on their recovery ... and then being told that their insurance company is denying all future residential treatment and unless an appeal is approved, they will need to leave the facility the next day ... unless they or their parents can come up with a lump sum payment for future treatment measuring in the thousands of dollars. The medical director at the facility knows the patient still requires the higher level of care. The patient's counselors know this. Any competent medical practitioner familiar with eating disorders and the American Psychiatric Association guidelines and the DSM-V would know this. And yet, the insurance company's representative physician figuratively "pulls the plug."

In Morgan's journals, she wrote of feeling helpless, hopeless, defeated, frustrated, angry ... not at her eating disorder in these instances, but at the insurance company which she knew would not allow her to receive the crucial treatment she desperately needed.  She was fighting for her life. And she knew that the insurance company would be fighting against her.  After all, United Behavioral Healthcare had to make its $68 BILLION dollar profit in 2015 some way!

Insurance providers point to a "peer-to-peer" program to combat the perception that it does not care about the health of its insureds.  In a peer-to-peer review, the review is typically done as a scheduled telephone call between the insurance company's physician representative and the qualified healthcare professional who requested the review. The reviewer applies the health plan’s medical coverage guidelines to the clinical information, use clinical judgment, and render a decision. Although the reviewer is a delegate of the insurance company, allegedly the peer physician receives no financial incentive to deny or to approve a request. And yet, even a cursory investigation reveals that numerous peer review companies exist and market themselves with some even touting its transparent, competitive pricing. 

Now, ask your physician, or the residential program's physician, how often the peer physician has reviewed all of the medical records, or if they specialize in eating disorders or if they are up to speed on the latest medical articles or journals dissecting eating disorders.  Undoubtedly, the peer physician is acutely aware of the insurance company's policy language.  And they are ipso facto, making medical treatment decisions on behalf of the insurance company ... and for you, the insured, the patient.

The insurance company has a fiduciary relationship with you. It has the duty to act in good faith and deal fairly with you. It stands to reason that the insurer must then also employ peer physicians in good faith, physicians who are competent and who must hold the insured's needs paramount within the context of the insurance policy. At that point, the question must be asked, if the peer physician has a reasonable basis to believe that his/her treatment opinion regarding the patient/insured does not comply with, or even violates the accepted medical standards of care in the community, don't they have an ethical, if not legal obligation to inform the patient/insured, the treating physician and the insurance company of this fact?  And if the peer physician is not taking into consideration the APA guidelines or the DSM-V, how can their opinion of treatment needs be anything but suspect?  The peer physician can attempt to qualify the remarks by stating that pursuant to the insurance company's policy language, the insurance company is refusing to pay for future treatment. But, interpretation of insurance policy language should be left to legal minds ... not medical minds. What experience does the peer physician have with legal interpretation?  Or, is the insurance company feeding the peer physician its own legal interpretation and merely asking the peer physician to color by numbers with regard to denying treatment under the policy?  This illustrates the harsh reality that compliance with the generally accepted medical standard of care for a patient/insured is often secondary to the substance of the insurance policy.

So, how are we to proceed?

A Call for Accountability

As the insured, you have a right to the records your insurance company and its peer physician reviewed regarding your claim ... including the identification of that very peer physician.

There is a very strong likelihood your insurance policy does not incorporate the American Psychiatric Association guidelines or the DSM-V guidelines with regard to reviewing and treating an eating disorder.  We all know that treating eating disorders involves a laborious, very long process and in most cases, takes years of treatment, therapy, pharmaceutical drugs and interaction.  And yet, without these standard guidelines, upon what basis and guidelines is the peer physician utilizing in reviewing your claim and making rational, medical treatment decisions which impact you?  Is it legal interpretation of an insurance policy that the physician is not qualified to give?

I am not suggesting filing a medical malpractice claim against the peer physician.  You very well may not even have “standing” as the judicial branch defines that term to file a malpractice lawsuit.  Further, malpractice laws in some states can seem almost draconian in their application and if you file a malpractice lawsuit in bad faith, you could be subjected to costs and attorney’s fees.  However, each state does have it own Board of Medical Examiners.  These Boards are appointed, or voted in, to oversee the medical profession in its respective state. These Boards are designed to protect the health, welfare and safety of its citizens against the unprofessional, improper, and unauthorized practice of medicine by ensuring that those who practice medicine and other allied health professions under their jurisdiction are qualified and competent to do so.   In addition, the Boards serve in an advisory capacity to the public and the state with respect to the practice of medicine.

These Boards also have a complaint process in place wherein persons who are aggrieved may seek assistance.  Most Boards can publicly or privately censure a physician, suspend them from the practice of medicine or in some cases, revoke a physicians’ right to practice medicine.  Assuming a peer physician is rendering an opinion regarding treatment that is not based on the accepted medical practices or what is in the best interest of the patient, but instead, the opinion is simply based on insurance policy interpretation, then arguably the peer physician’s opinion could and rightly should be construed as improper, unprofessional and not in compliance with the medical standards in the community. Upon proper complaint, the Board should open an investigation into that peer physician and review the process utilized by the peer physician in reviewing claims for that insurance company.  The Board could dismiss the complaint out of hand.  It could choose to investigate.  Ramifications could include dismissal of the complaint, private or public censure of the peer physician or even a revocation of that peer physician’s license to practice medicine.

It stands to reason that if claims start to increase, perhaps even dramatically so against peer physicians, the peer physicians themselves would have cause to complain against their masters, the insurance companies employing them. In order to maintain the integrity of their profession and reduce the number of administrative claims, the peer physicians would necessarily have to exert pressure on the insurance companies to amend policy language to conform with the recognized and accepted medical practices utilizing APA guidelines.

Combined with political and societal pressure, the insurance industry would be isolated and confronted with the reality that they must change their business practices to conform with recognized medical guidelines … before state or federal legislatures require them to make those changes.

Evolution and change is not easy; nor is it expedient.  But, it is necessary.  As some of the brightest and best of our children are ripped away from our loving arms, we must be strong and resolute.

Happy Birthday my Beloved Daughter, Morgan.

Today is the 24^th birthday of my beloved daughter, Morgan.  

And yet, physically, Morgan will not be here.  That bastard Demon, Eating Disorders claimed her on October 30, 2016 at 11:31 o'clock p.m.  The path of destruction caused by the taking of that one life reverberates today.  Heartache, pain, sorrow ... an immeasurable ocean of anguish ... having to swim with all of one's might to stay ahead of that tidal wave of primal darkness are a harsh reality and cannot be ignored.

That Demon will be hovering outside of my place tonight.  I will be aware of its blood stained claws scratching at the windows.  I will be aware of the dark, ripped hooded robe concealing its evil, grinning death mask ... a mask that never quite shows itself and never reveals its countenance in the bright light of day.  That Demon will be hovering, knowing that as sorrow overwhelms us, it will grow ever stronger, ready to claim even more victims.

And yet ...

I will also see, I will sense, I will feel, the ever growing sensations of doubt, and concern and the onset of fear in that Demon.  When that Demon hovered outside of my window last Christmas, anticipating that it would gloat, it instead was met with love, with strength, with the bond that only love can bring.  And we did not let that Demon enter our houses. Candles were lit around the world for Morgan and her incredible fighting spirit.  And the Demon left my house, not strengthened, but instead confused and in doubt.

And so yet again, it returns to attempt to haunt me and others who loved Morgan deeply.  And once again, it will fail.

Tonight, the Demon will see first hand, it will experience true emotions.  Yes, it will see sadness. We must acknowledge that sadness so that it does not overwhelm and define us.  But, it will mainly see a house filled with people.  It will see a party, a celebration of life!  It will hear singing.  It will hear incredible music.  It will hear us as we drink toasts in celebration of life.  It will hear how our community has rallied and said, "Enough!"  No more!  And it will hear the changes that have occurred as we proudly announce the growth and renewed faith and strength in our community.

I will look the Demon in the eyes and once again, stand tall and say, "I am the Storm."  You may have taken my heart, but an incredible soul was revealed to me and its purpose was made clear.  You have created the very means of your inevitable demise.  There are, and will continue to be, other Warriors even stronger than me, more soulful than me, who will pick up the call to arms and will fight you. There is an army of us now, both on this plain and the next.  And we are coming for you.

Tonight my beloved daughter, we pick up the call to arms you left for us.  We are resolute.  We will not waiver.  We will not fail.

So you Demon Bastard ... run.  Run as far and as fast as you can.  But, you will not escape. We will find you. And our love, our strength, our souls, our passion will destroy you.

It is YOUR turn to feel fear.