My Story

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I (Lindsey) spent almost a year in 2008 working with a consultant to create a business plan intent on navigating the healthcare system - due to experience working in different acute care hospitals early in my career - and to the very bumpy road I had experienced helping a "family member" access and use mental health services.  I had borrowed against the equity of my home to rearrange funds and pay the mental health bills. This was before mental health parity (mental health fee payment by insurance). 

 When the financial problems of 2008 hit, I put the company on hold and returned to health IT consulting. At the same time,  I silently vowed to one day launch the company I had envisioned.   

In 2014, a very personal situation involving mental health services for that same "family member"-- upended my world.  It is a story I cannot yet tell in detail but one that has created my own brain/mental health journey, and which drives my relentless passion to improve in some small way -our present, broken, mental healthcare system.  

In September 2014, my oldest daughter attempted to "escape" from family with her three toddlers due to her belief that certain family members would separate her from her children due to her severe mental illness (SMI).  In brief, she stated that she gave my two youngest grandchildren to a friend to care for until she could meet them.  It is so very complicated; my daughter is now at a Maryland Psychiatric Hospital, charged with their disappearance.  Due to her "incompetence to stand trial", the case is in a brutal, ongoing holding pattern.  

The situation has received considerable media coverage, however I am not sharing links to publicity due to the mixture of partial truths and troubling assumptions. My hope is to make others aware of my situation, yet not focus heavily on the details.  My role from the first few weeks of this crisis forward, has been that of collector and curator of all available data, including text and e-mail messages of the family, for the months leading up to the situation (perhaps a good match for someone working in informatics).  

Early on, experts in missing persons advised me "not to throw out anything." As the children and my daughter were at my home a great deal, this led to an abundance of disorganized, cryptic data, yet also provided enough puzzle pieces for me to construct a fairly accurate timeline of events. 

While there is no forensic evidence; her diagnosis of a SMI prompted authorities to move the case to Major Crimes (homicide) within 72 hours--before she was even found. My determination to discover the truth has not waned during these past 7 and 3/4 years; neither has her consistent vow that she had a plan to take the children and disappear for fear of losing them.  Navigating this ordeal has highlighted the many stigmas and misunderstandings of mental illness.  There is no one size fits all --in the presentation of a SMI nor in the treatment. 

During this time, I also have assisted friends and colleagues in addressing and securing treatment for loved ones struggling with symptoms of mental illness.  I have reasons to be hopeful for progress in mental health care and in my personal situation.  (continues in next column.)

My handling of this very public situation had been to keep personal and professional content in two separate "containers"-- for want of a better word.  My intent to avoid placing colleagues/friends in the uncomfortable situation of commenting on this unthinkable ordeal eventually evolved into my own struggles with mental/brain health.  At some point, I will elaborate, but I can say that the brain is quite adept at modeling itself around pain and trauma. The simple presence of  children's voices, seeing them run by in public -conjures up my subconscious (obsessive) attentiveness in that direction. 

I have struggled if and how much to share of this situation, but think the knowledge of my experience with mental illness, coupled with working in health care, my unquenchable quest for mental health answers, and new work (and hope) in the plasticity of our brain best highlight my passion to make a difference. 

My intent is to focus on understanding the many options for those with brain symptoms/mental illness. A staggering statistic is that 80 percent of those in search of mental health services have no idea where to begin.  I hope to change that statistic.

 For those wondering why I use "brain health" and "mental health/illness", brain health represents the recent representation of how our brain can be modified by a variety of factors. "Brain Health", although not officially defined in the health care world, loosely represents a brain that is not yet burdened by illness, while "mental" infers an existing condition/symptom.  In short, "Brain Health" implies that hope that positive changes can happen in our day-to-day existence. One organization that has been working on "Brain Health" for several decades, amongst many others give me pause for hope: The Center for Brain Health (University of Texas at Dallas)

In researching mental illness and brain health, I have been pleasantly surprised by the recent explosion of behavioral telehealth services and payment (due to COVID-19), new innovative approaches to treatment, and the abundance of new organizations tackling mental illness.  At present, psychiatric medication and behavioral counseling are the foundation of traditional mental health care.  Unfortunately almost half of those on medication discontinue its use due to their extreme side effects.  2 Percent Health is here to guide members on caring for their brain - including awareness of new and evolving research.   

I believe this renewed focus on brain health serves as a driving factor in our present "tipping point" in brain/mental health. 

The publicity from Olympic athletes, movie stars, and Royalty is casting brain health and mental illness with a new lens.  I am grateful for the many divergent factors driving a new glimpse of mental illness and brain health. There are reasons to be hopeful.