@2healthguru: My e-Patient Story

October 12, 2012

By Gregg A. Masters, MPH

I have been reluctant to share this story as many years after the trigger events that led to my descent ‘into the ashes’, I still feel some residual shame when discussing what happened and my part in the drama. Yet, as a member of the Society for Participatory Medicine and active participant in the empowered patient conversation, I’ve been recently challenged to both better understand and articulate my personal e-patient narrative. And to deliver it in a reader friendly and straightforward fashion.

The spark which began this overdue ‘deep dive’ of a personal inventory was initiated by Regina Holliday’s (aka @reginaholliday) rendering of my story via her artistic vision. This resulted in Regina’s painting jacket #93 for ‘the walking gallery‘ variably dubbed (by me) as ‘it’s only an egg‘ and later ‘learning to fly’.

My story is one of chronic and ethical drug resistant depression due to battle fatigue fighting those voices telling me I am fundamentally a ‘fraud’, and it’s only a matter of time before you see that and throw me away too. After-all my magical magnifying mind reasoned, dad left, so you must be ‘defective goods’.

Best I can tell, my bout with depression stems from a history as an only child born to a single mother who was herself little more than a ‘child’ at 20 years of age. According to mother, my biological father who denied paternity was an osteophathic physician practicing in Philadelphia by the name of Dr. Robert Shapiro (now deceased). My unplanned though ‘creatively explained’ bastard birth, resulted in early child rearing via shared co-parenting with my grandparents (‘pop’ a Roman Catholic Italian and ‘gram’, a German Jew). Their marriage was a rather ‘disruptive’ union for the times circa 1929, and both sides of the family rejected the inter-religious marriage for quite some time creating considerable internal familial estrangement. In this arrangement I spent 6 months with my grandparents in Brooklyn, New York, and 6 months with mother in Hollywood, California, shuttling back and forth on TWA (mom’s employer). My overall experience and memory was one of never quite fitting in. Inside this family unit, mom was more like a big sister than a traditional mother per se, and my grandparents where more like parents, though the real siblings (two uncles in particular) never quite let me settle in as the ‘fourth child’ of the ‘Mastellone clan’.

But rather than bore you with genealogy minutia, lets fast forward to the ‘event’ which triggered my professional ‘demise’ from an accomplished career in the hospital and managed care industries. I was the newly appointed Senior Associate Hospital Director for External Affairs at UCI Medical Center, where I presided over the liaison duties with the UCI College of Medicine (the Dean’s office and Department Chairs), as well as the strategic repositioning of the medical center into the private pay market. I was recruited by then Executive Director Mary Piccione as she served on my Board at the LifeCare Network of Orange County (aka Plexus Alliance) a regional hospital alliance which I founded and served as its CEO. I split time at the alliance while also serving as Area Vice President for American Medical International’s (AMI) newly constructed medical mall ‘hospital of the future’, Irvine Medical Center as well as the Medical Center of Garden Grove.

About I and 1/2 years into my tenure at UCI Medical Center, I began to notice one of my direct reports serving as Assistant Hospital Director for Marketing was in the office before I arrived at 7:30AM and routinely staying past 7PM when I usually left the medical center. I had recruited her from St Joseph Health System in Orange, to help me implement the private pay vision for UCI Medical Center (we were both colleagues and friends), as she was an accomplished medical practice manager. At one of our direct report meetings I made the above observation, and then asked the direct question why was she routinely working so late, to wit her reply was:

‘trust me Gregg, you do not want to know….’

I probed but to no avail. Shortly thereafter I was approached by my boss and advised that the Assistant Hospital Director for Marketing would no longer report to me but would now report directly to her as chief executive of the Medical Center. The rationale went something like ‘you’ (Gregg) have a full plate and don’t need the aggravation of hospital operations – specifically the management of the medical ‘Pavilions’ where the UCI clinical faculty primarily saw their ‘private patients’ vs. the clinic settings for MediCal, other government and charity program patients.

At this point, as a single father solely raising two sons (ages 3 & 5) and focused on my ability to provide for the family unit, I interpreted the management move as a sign that my future was ‘at risk’. I made several efforts to clarify my status, but despite assurances, I never got the clear message that all was well. As a result, I ran with a malignant, fear based narrative that an inevitable and irrevocable fall from grace was in store, as UCI Medical Center politics had consumed its disproportionate share of previous executives.

So one morning in October, upon awakening ‘it was dark both outside my window, as well as deep inside my soul’. I had ‘come to’ in the midst of a deep and paralyzing sense of ‘impending doom’ and did not know what to do. I couldn’t breathe. My chest was pounding. I was hopeless and in despair. The thought of driving into the office seemed like a ‘sisyphean’ undertaking. I couldn’t do it, so I wound up calling a mental health hotline which connected me with a local psychiatrist, who ultimately recommended an inpatient admission for the treatment of what he called an acute depression.

That admission and dealing with the isolation I felt (things where different in the late 80s to mid 90s) eventually resulted in a ‘face saving’ resignation from UCI Medical Center. What followed was a 2+ year disability interval, and a lengthy struggle to get back into my career in the managed healthcare and hospital management industries. During this ‘career layoff’ I watched and ultimately learned the answer to my earlier posed ‘why are you working so late’ question via breaking stories in the Orange County Register and New York Times:

NOTE: For a detailed history on the UCI Center for Reproductive Health story, click here.

As someone who occasionally struggled with establishing and enforcing healthy boundaries (both personal and sometimes professional) and at times challenged to correctly distinguish between where I end and you begin, I found myself ‘owning’ the failure of a portion of the institution’s performance over which I presided, i.e., this happened ‘on my watch.’ Add to that the sense that I failed as an executive, i.e., I couldn’t handle it (a real leader would have managed), and you have all the ingredients for a disabling shame spiral. Rather than maintain the objectivity of what was really happening, with proportionality of events, I chose to buy the lie.

Over the years and after considerable work in 12 step recovery programs, participation in the ‘ManKind Project‘, and on again off again ‘processing’ and healing I found myself increasingly attracted to and engaged in social media. This medium became a surprisingly effective vehicle for self expression and connection, initially via twitter and more recently through blogging and Internet broadcasting. As a result of all of the above I have come to realize the ‘truth’ about my situation. I did not fail, I was sick.

Mental illness, and mood disorders if not depression in particular are quite prevalent, poorly understood and often under reported. There is no judgement associated with having diabetes or cancer. The same can not be said for behavioral health issues. Unfortunately those of us in the healthcare industry find it difficult to admit we need help, as this remains a stigmatized ‘dis-ease’. We routinely care for patients suffering from depression and related disorders all the time without judgement, yet when it comes to our experience with this disease, we fear being seen as afflicted since it may affect our career path. So we hold back, and suffer in silence pretending we are not under duress. Though times have changed, the stigma, lack of parity with general medical benefit coverage and considerable misunderstanding of mental illnesses has lessened due to self help, 12 step fellowships, and more recently e-patient communities, it has not entirely lifted.

I tell this story with the intention that others who may be in a similar situation(s) can find the hope and help that is available. If you are in this position, I welcome your comments here or via email to me at gregg(at)healthinnovationmedia(dot)com.

After all a burden shared, is a burden lessened.

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