Grief, Easter, Hope and Death

This post has been a long time in coming. There have been numerous times where I wanted to start it, tried to start it, actually started it and then each time, backed away. Truly, it is past time to peel back the curtain.

Christians worldwide will be celebrating Easter on April 1. Easter. "Let none fear death, for the death of the Savior has set us free."  The New Testament teaches for those baptized will be reunited with Him in a resurrection like His.  This promise of eternal soulful life is one of the centerpieces of Christianity.

Even for our agnostic and atheist brethren, the springtime celebration of life both precedes and succeeds Christianity as evidence of reborn life blooms around us all.  In the Northern Hemisphere, spring is a time of rebirth, when vitality returns to the land after the desolation of winter.  The cycle of life starts anew and fills us with hope as temperatures warm, the beauty and color of flowers and new life warms our hearts and brings hope for the future.

And yet, to a parent who has had a beloved child taken from them, that cycle of life can seem like an empty promise, a cruel lie. To remember, and to be told that that child's soul was reborn and is now at peace can ring so incredibly hollow as the permanence of the loss continues to grip the heart with icy fingers that threaten to squeeze the last vestiges of joy and love from that parent. 

Grief. Grief. Such a short word.  5 little letters. 5 of the most powerful letters imaginable.

Last year I wrote of a message a dear friend gave to me after Morgan was taken.  In essence, that message was ... When faced with unspeakable tragedy, one of three things tends to happen: (1). It destroys us; (2). It defines us in a negative way, or (3). It fills us with incredible strength and resolve.

We cannot choose which of three will define us. Life, our soul, our fate, our God, a power greater than us makes that choice for us. And whether we are ready or not, that choice is foisted upon us.  For me, I truly believe that my soul was revealed to me ... and its purpose was made clear.  The journey, the path, I had to take was placed in front of me.  And so, with an aching, damaged heart, clouded vision, shaky faith and with no understanding of where the journey was to take me, I began to take uncertain, forward steps.

I remembered some of Morgan's words (teachings?) when she wrote, "I can seem to help so many other people, I just can't save myself."  And maybe subconsciously, I took that belief to heart and tried to adopt it as my sword and shield.

And yet, looking back, 2017 is a fog.  Vague remembrances of  events that occurred.  Putting together a "Night with the Experts," organizing a team in Morgan's name to participate in a fun walk, giving a TEDx talk, talking twice to minority teenagers on the dangers of eating disorders, starting this blog, putting together a gala thinking that I could galvanize an industry, accepting the accolades of the Texas State Senate and House of Representatives.  Helping young people receive treatment for their eating disorder issues. And all the while, people coming up to me, from near and far saying how they so admired my strength and courage, firm in their conviction that they could not do what I was in the process of doing. I became focused on helping others handle their pain and grief, starting with Morgan's Celebration of Life.  I knew... I just knew that by helping others, by being there for everyone else to guide them through their grief, I was handling my grief in a productive, positive manner.  I was so incredibly wrong.

I was taking that rage I felt, that incredible pain and sorrow that was consuming me, and I was hiding it behind a mask of competence and conviction and lashing out at others who I believed were standing in my way. And as people continued to "laud my actions," the emptiness within threatened to define me. I threw my financial resources toward dubious sources and events.  I trusted people who did not deserve that trust. And rock bottom hit. Suddenly, life being over did not seem harsh,  the perceived peacefulness of death, of having this incredible pain and anguish lifted from me for all time.  I would no longer have to feel like the very best parts of who I was had been forever ripped away.  Finally, rest. Finally, peace. It was so simple.

And when I began to feel at peace with that possible reality... I then, I felt, I vaguely heard quiet laughter.  I listened very carefully. I questioned and wondered where I had heard that laughter before.  And then it hit in an incredible moment of clarity. I last heard that laughter, only louder and much more clearly, in a quiet hospital hallway on a dark, Sunday night in October 2016.  I heard that laughter right after this insidious disease had claimed the life of my beloved daughter. Then, the laughter was mocking me. It was a manifestation of that demonic disease claiming dominion over me.  I found resolve that night.  I found courage. Or so I thought.

This time, I found clarity.  Eating disorders never left me.  It was not yet done with me. It was not back in my house, back in my life because it never left.  It was hiding in a clever way.  It was not present through the obvious manifestation of the symptoms of the disease. It was far more subtle. It had not left but instead, it grabbed the pain, the anguish I was feeling and it made me believe that through actions perceived to be strong and courageous, I was overcoming and handling my own grief. And it was causing that grief to continue to slowly grow, to become stronger to get to a point where it would overwhelm me and this damnable disease could claim another victim. I underestimated the Demon.  I falsely believed in my own strength.  My ego was being used against me in a nefarious, underhanded way.  When it stood up to me that late October night and said, "You cannot withstand the storm," it manipulated me into believing that very night that "I AM the Storm."  All the while, this insidious disease was changing the course and direction of the storm and coming at me, coming at all parents whose loved ones suffer from this disease, from a different direction. How incredibly smart it is. How all encompassing. How nefarious. How close it came to claiming another victim.

But, I was pulled away from the abyss. I do not know how. I do not know why. Perhaps it is a continuation of the journey upon which I had been placed.  Perhaps it is simply not my time. Perhaps there is something yet to be accomplished. And yet, I learned. I will not forget how close it was to claiming my life. I will not underestimate it again. It is long past time to acknowledge my own vulnerability, my own grief, to take care of that grief in productive ways. And in doing so, I will become stronger, more focused.  I will start to truly heal. The Demon's laughter is gone. But, I am not naive enough to believe the Demon is gone. It never will be.  So be it. My armor just got thicker as the scar on my heart grew wider this past year.

Easter and spring ... a time of hope, of rebirth, of renewal. I cannot say those terms define me now. But, I am still here.  I am focused. I am resolved. I survived this insidious disease from claiming me as another victim this time.   I will grieve more personally and openly so I can live more openly and with greater strength.

The Army of Warrior Angels will have to wait awhile longer.  The work here is not done yet. Bring on tomorrow. The insidious Demon failed this time. And I stand a bit taller, a bit wiser and bit more humble.  The fight beckons.

Scattershooting While Wondering About Social Media Groups, Treatment Advice, "Evidence-Based" Practices and Egos.

Over the course of the past few weeks, a number of issues both large and small have arisen in the eating disorder industry bearing contemplation. So, let's sit on the front porch, light up a good cigar, open a single malt scotch and start solving problems. 

There are a number of open and closed groups in social media such as Facebook which act as "peer-to-peer" support groups for parents or loved ones of those suffering from eating disorders.  Recently, questions have been raised regarding whether owners or Admins of some of the sites are being at least partially funded by private entities involved in treating eating disorders.  

So, the initial question is should Residential Treatment Centers ("RTC") or for that matter, any private enterprise, in any way, distribute money to Admins of those groups and if so, should that be disclosed and does that necessarily mean that the advice rendered in those groups is tainted? If the Admins were the only ones giving advice or making recommendations, then yes a question of objectivity would be raised. My experience though is that the VAST majority of posts, advice, recommendations and opinions are rendered by actual parents in the peer support group. As such, is that advice tainted? No, of course not.  We just want our loved ones to recover. And yet, statements about non-care-givers or counselors or treatment personnel participating in those groups could be a cause for concern... if those persons are repeatedly attempting to funnel people to their own practice or facilities. Now those persons will undoubtedly “out” themselves by concerned parents when they are asked how they are involved and give veiled responses or if they keep giving the same recommendations for treatment at the same center.  If not, they could be a valuable resource for assistance and advice. It is not an all or nothing issue.

On to other contemplations ... Recently, I read a statement that treatment centers are largely “for-profit” entities in the US.  That person's grasp of the painfully obvious is remarkable. Of course they are… as are all of the private clinicians, counselors, nutritionists and doctors except those in academia or who work exclusively for non-profit entities.  I think that is largely a red herring.

However, some people believe that RTCs by their very nature of being for profit, engage in a cycle of "perpetuation of the disease."  They get the patient just well enough and happy with them so that when insurance “pulls the plug,” and the patient is transitioned down, they will inevitably relapse and will want to return to the place that made them feel the most comfortable… the RTC.  So, the incentive is not necessarily to pursue the best treatment available, but to get the patient just well enough to perpetuate their bottom line.  I have spoken with some academicians who also believe this theory so this idea is certainly not far fetched.  Let's simply have the RTCs disclose the number of people who have returned to their center on more than one occasion.  A mere number would not violate HIPPA and would add a valuable piece of evidence missing at this point.

Now, do RTCs have a place in the recovery process?  Yes, of course.  However, is it on the level that the industry currently places upon them?  Probably not.  Always remember, it is NOT just the doctor at the RTC who is making treatment decisions for our loved ones… it is the medical person employed by the insurance company who is making decisions based upon what the insurance policy requires and not what the APA guidelines state.

I have also heard much about "evidence based" treatment.  First, what exactly is "evidence based."  Yes, I know what the textbook definition is.  But that is not sufficient.  Any third year law student would be able to make a shambles of a dependency on "evidence based." I believe it is foolish to have a blind slavery to so-called, “evidence based” treatments. Instead, we need to look closely at the underlying “evidence”  and what evidence is actually being considered.  The “3 legged stool” of “evidence based” treatments has been shown in many cases, to in actuality, discount research evidence data.  “Research indicates that, for the treatment of bulimia nervosa and binge eating disorder, CBT and IPT have strong empirical support whereas DBT and certain types of medications have modest support. FBT has been found to be efficacious in children and adolescents with anorexia nervosa and bulimia nervosa, for whom timely interventions are particularly crucial." (quoted from an article on Evidence Based Treatment.)  In short, if a program is going to hold up "evidence-based" treatment as some type of gold standard, they had better be prepared to answer any and all questions about the underlying evidence... and not just parrot something that has been told to them.

In closing (and going back to support groups) at this point in time, where we, as parents who are in the fight of our lives to save the lives of our precious loved ones, find ourselves is being subjected to bickering, in-fighting, accusatory finger pointing, ill-will and bruised egos from Admins or Moderators in a number of closed groups across all social media who would like to see nothing more than other groups fail because that would prove they are “right” in their opinions on how to fight this disease.  The power of the message is undermined by  the image of the messenger.  More’s the pity I suppose. And trying to reel in those egos is like trying to round up a herd of cats in a room filled with rocking chairs.

Until the medical industry gets serious about researching this disease and treating it as a disease, we are doomed to continue to wander the desert.  Until the biological and genetic causes of this disease are more fully explored and understood, this disease will be treated as an “unfortunate condition.” Until counselors and primary care physicians start understanding and discussing the brain and oxytocin levels and nitric oxide deficiencies and hormonal imbalances, we will continue to flounder.

And all the while, our loved ones will continue to perish and that Army of Warrior Angels will continue to grow while we are left trying to put back together our shattered lives.

The Power of the Message.  The Power of the Message.

The Brain ... It Is Time to Start Using It.

The Brain.

A Biologically Based Disease.

Hormonal Imbalance.

Endocrine Deficiency.

When talking about eating disorders today, how often do you hear counselors, nutritionists, medical directors at treatment centers or doctors explain and emphasize these terms when discussing eating disorders?  For that matter, how many of our primary care physicians, pediatricians or general practitioners even know that these terms pertain to eating disorders?

On March 17, 2018, I gave a TEDx talk at the TEDxOakLawn event here in Dallas, Texas.  The presentation was entitled, "Let there be Light - A Bold Solution to the Ineffective Treatment of Eating Disorders."  One of the talking points was addressing the current state of medical training about eating disorders. The following facts were mentioned:  

1.  In an average, three-year medical residency program, our doctors are receiving on average, ONE HOUR of eating disorder training.  (I did congratulate those in attendance that after listening to my presentation for 15 minutes, that they had now received 1/4 of the total education on eating disorders that our medical professionals are receiving.

2.  In 2012, the American Medical Association offered its members an optional 17 minute online course on eating disorders. Only .04% of eligible members viewed that course. That is for every 1000 medical professionals, only FOUR bothered to educate themselves.

3.  A few months ago, I was assisting a family in Maine in their complaint against a doctor with their State Board of Medical Examiners.  In its ruling, Maine's State Board issued this finding: “This case is colored by educated parents trying to get state of the art care from a state known to have slim resources for this condition.”

The disease that has the highest mortality rate amongst all mental illnesses is being referred to by the very State Agency which oversees the discipline and education of its medical professionals as a "condition"  Oh... and we are sorry you good people in the State of Maine, but we do not have the resources to educate our medical professionals so you and your loved ones will just have to soldier on.  For that to be a state’s official position on this disease is irresponsible at best … reprehensible at worst.

And yet, going back in time, in the early 1900s, the belief of the medical industry was that eating disorders were thought to be physical diseases due to a medical condition, hormonal imbalances or endocrine deficiencies.  And at that time, the medical industry was going in the right direction!  But, primitive and flawed, or non-existent technology doomed any progress or advancement.  And then, “modern medicine” came into the picture. 

So today, how is “modern medicine” trying to render treatment to people suffering from this deadly disease?  In essence, by attempting to “talk it to death” and by throwing prescription drugs at the symptomology. Family Based Therapy the Maudsley Method,  CBT, DBT, Equine Therapy, Art Therapy, Dance Therapy, Yoga Therapy.  Depending on with whom you talk and the specific year, each of these therapies alone or in combination hold the key!  Perhaps as long as you can afford to keep coming back time and time again and perpetuate the “treatment cycle.” And all the while, they are ignoring the key component to possible recovery … research and treatment into the brain.

Now I am not a doctor, I do not play a doctor on television and I did not stay at a Holiday Inn Express last night.  Doctors like our Carrie McAdams at UT Southwestern and Walter Kaye at UC San Diego have damaged or killed more brain cells drinking martinis than I have active in my head. Yet, I can muddle through research and can connect dots. I also know when a system is broken and needs to be overhauled. So, as little closed groups of parent advocates fight amongst themselves over petty squabbles and argue about which program is best on social media and the “image of the messenger becomes more important than the power of the message,” let’s take a quick look at the brain … and what can possibly be explored.

Many research scientists believe that eating disorders process in certain parts of the brain including the insula and as the insula processes feelings of hunger, and other sensations such as taste, flavor and texture the anterior cingulated cortex then becomes involved in terms of decision making and anticipation of reward.  Finally, the dorsolateral prefrontal cortex (the brain region associated with the ability to manage negative emotions and impulses), gets involved and hopefully, regulates self control.  And yet, depending on the type of eating disorder, those brain areas process information differently.  What we do know is that studies are showing a dysfunctional development and/or hormonal imbalance, endocrine deficiency and electrical activity in those parts of the brain.

So, what happens in the brain of a person with an eating disorder?  According to doctors like Carrie McAdams, there is a weak sense of self, the patient believes that something is wrong with them, they do not fit in, but as their thought process muddles through a white curtain of noise and distraction they think that by changing their appearance will change how they feel about themselves through dieting, bingeing, purging. And the starvation and purging behavior negatively impact the levels of protein in the blood and the neural circuitry related to how they perceive others and themselves which could actually perpetuate the cycle of the disease. So, can this be addressed and changed and if so, how do we change this?

One possible solution is Photobiolmodulation. Studies show the brains of people with treatment resistant eating disorders are not functioning normally.  As previously stated, there is a lack of electrical activity and reduced hormones in those certain parts of the brain. Some studies have also shown that near infrared light treatment penetrates the skull and dermis, stimulates the mitochondria in brain cells, which then releases nitric oxide and Adenosine Triphosphate. Nitric oxide is absorbed by the nucleus, which then through its interaction with ribosomes releases oxytocin, dopamine, endorphins, and other natural neural hormonal secretions. This increases electrical activity and hormonal production flowing into those areas of the brain.  

Photobiomodulation is designed to quiet the noise by regenerating activity on a cellular level in the brain by increasing electrical activity, hormonal production, and regeneration of cellular activity. So instead of hearing a curtain of white noise, a patient can hear and process clear, life affirming messages while significantly reducing their dependence on prescription drugs. Further, it empowers the patient to take control over their recovery program to a greater degree and more importantly, it gives HOPE.  Not just hope for the person suffering, but the family and those who love the person afflicted.

Will it work?  There is tremendous promise.  Is it a cure all?  I do not believe anything is a “cure all” for this insidious disease and our loved ones will continue to die.  But, if we can get off this horrid merry-go-round of death, if we can look forward with the courage of our convictions, if we embrace the possibilities afforded by new technology and progressive thinking, the future could be bright. We have a given problem to solve. If we undertake a bold solution, there is of course always a danger that we may initially fail … that we may not solve the problem at first; but to refuse to undertake a bold solution simply renders it a certainty that we cannot possibly solve the problem.

A Program Dies ... And the Industry Weakens

First, apologies on my absence the past few months.  Grief is a curious emotion.  We can float along in a fog passing as life for the longest time and then, the permanence of a loss abruptly grabs our heart and our throat and threatens to squeeze the last vestige of life from us. And yet persevere we must and we shall.

On March 12, 2018, Texas Health - Presbyterian Hospital ("Presby") announced that it was discontinuing and closing its eating disorder program after being in existence for over 20 years.  Now, Presby is a not-for-profit hospital. It's last medical director, Dr. Melissa Pennington left the program in 2015 and Texas Health was unable to restaff her position.  And yet, one of the foremost research scientists in the United States specializing in the brain and eating disorders, Dr. Carrie McAdams of UT Southwestern was associated with the Presby program, spent every Thursday at the facility, conducted both parent and patient groups and was instrumental in the excellence achieved by the program.  Dr. McAdams' credentials and reputation are beyond reproach.

Eating disorders are approaching epidemic levels in the United States and abroad.  Of the 325 million people living in the United States, it is estimated (on the low side) that approximately 30 million people have or will have an eating disorder.  This exceeds the population in the State of Texas.

Its severity is similarly well known.  It has the highest mortality rate amongst all mental illnesses.  Once every sixty-two minutes, someone dies as a direct result of an eating disorder.  And yet, the oldest program in North Texas is closing their doors.  And it is time to conduct an autopsy.

In anticipation of the growing number of eating disorder patients, Presby expanded its facilities As a not-for-profit hospital, Presby accepted Medicaid, Medicare and Tri-Care.  However, it is well known that these government-subsidized insurance programs do not pay sufficiently to sustain an eating disorder program.  This is, in great part why the "for-profit" facilities do not accept these government based programs.  And in not accepting Medicaid, Medicare and Tri-Care, one cannot help but wonder how much that is perpetuating the myth/reality that this is simply a "rich little white girl's disease." The well-to-do, mainly Anglo parents of children have health insurance in place and the insurance entities are more than happy to continue to accept insurance premiums while looking at the slightest pretext to deny coverage safe and comfortable in the knowledge that their insurance contracts do not have to comply with the current accepted medical standards set forth by the American Medical Association and American Psychiatric Association.

Shortly after Presby's expansion, the Eating Recovery Center of Denver, which had just opened a facility in Plano, Texas, a suburb of Dallas, announced that it was supplementing its program by including a 24/7 in-patient unit.  ERC is a for profit, multi-state, multi-facility conglomerate.  It has the financial resources and marketing reach to take many patients with different types of insurance.  It also has the financial resources to buy marketing advertisements on different internet platforms.  In short programs like ERC are comparable to Wal-Mart putting Sears, Roebuck and Mom and Pop stores out of business.  But, at what price is a soul sold?

Questions need to be directed at the for profit programs such as: 

1. What is your recidivism rate?  

2. What is your leaving against medical advice rate?  

3. How often do your doctors make medical decisions and decisions regarding transitioning out of your program versus how often does the applicable insurance company make those decisions?  

4. How does your program minimize the use of potentially addictive, dangerous prescription drugs?  

5. In terms of recovery-based and evidence based terms, how does your program compare to academia based programs?  

6. Does your program utilize LPC interns and if so, exactly how are they supervised?

7. How many minority patients have you treated in-patient in the last 12 months?

8. What exactly is your protocol for coordinating treatment with the patient's treatment team when they return home?

9. Does your protocol for after-care include sending the patient's notes to the treatment team at home so the transition is smooth?

And yet, the issue which causes the greatest concern is ... whether the for-profit centers in some way perpetuate the cycle of treatment such that the patient feels comfortable with the treatment center ... and when the patient inevitably lapses and satisfies the insurance carrier's criteria for in-patient care, they are anxious to return to the place that brought them in their minds, the greatest comfort .. and all the while, they are merely cogs in the financial well-being of the for-profit facility.

Nefarious and unrealistic? Or ... is it.

After Presby's demise, I am not aware of any eating disorder treatment programs in the states of Texas, Oklahoma, New Mexico or Louisiana which accept Medicare patients.  That translates to approximately 40 million people in the United States, or approximately 12% of its population cannot get help unless they have some type of insurance in place which covers eating disorders.  And according to sources with whom I have spoken, this a growing problem universally across the country.  Large, behavioral for-profit facilities are getting exclusive and in-network agreements with insurance providers to the exclusion of academic single sites which combine state of the art thinking and progressive therapy with the latest research on mental health.

The eating disorder community is significantly weaker when the academic single sites are forced to close.  Perpetuation of the cycle of this disease results in more lives being ripped away by this insidious disease and no real solution or broad treatment protocols are allowed to evolve.  We cannot keep ignoring the biological and genetic causes of this disease while using our loved ones as "cannon fodder" for this disease.

The winds of change... the winds of litigation war are starting ... and will only get stronger.