Half of Me

The other day I got a call from Cindy Throop.  She had decided on the patient story for her jacket.  She was coming out of the closet about suffering from depression.   For 20 years she has suffered from the effects of depression, and now she has decided to let others know.  Mental illness is still a no man’s land for many of us advocates.  Oh, you can talk about cancer and dying.  You can even talk about unhygienic beside tray tables.  But there is a feeling of “Shh, we don’t talk about mental health.  It is verboten.”  What if we lost our job?   What if we could never get health insurance because we admitted to depression?

I once went without health insurance for three years, because I was too scared to admit I had been depressed. 

In 1993, I was 21 years old and in Navy technical school.  I was suffering from situational depression.  It was really bad.  I missed Fred and my family.  I was bunking alone in a strange city.  I knew almost no one in Chicago.  I was spiraling into sadness.  During this dark time, I was admitted into the Naval hospital for psychiatric treatment.  I didn’t take drugs for depression.  I just talked with the counselors, and I drew. I find art to be an amazing form of medication.

I began a very large pencil drawing.  The staff said it was a nice picture, but why the really big empty space?  I explained that it was my life story, and my life was far from over.  I think that was the right answer, because I was soon released.

A year later I was hired at Child’s Play, a toy store in Washington, DC.  Within a few months, they gave me a form to fill out for insurance.  I read the questions on it.  “Were you hospitalized in the last five years? And if so where and for what reason?“  I was terrified and embarrassed.  I knew I could not fill out that form and turn it in.  I told my boss I was turning down the insurance.  He looked at me quizzically,  “You understand that we pay for it, it won’t come out of your salary.”  I still shook my head no.  He continued, “If you don’t come aboard now you will not be eligible for another year…” I still said no, I did not want it.  He walked away shaking his head.  In 1995, 1996, and 1997 I would be given the form again.  Each time I would turn down the insurance after reading, “Were you hospitalized in the last five years…”

I met Cindy a little less than two years ago.  She is part of my health 2.0 Ka-tet.  I met her at the same meeting at which I was introduced to Ted Eytan and Susannah Fox.   We hit it off almost immediately since we had so many things in common.  She is now one of the emergency contact people for my children, and she created my advocacy time line on open health.  She is funny and kind and often brings a little stuffed animal to events called Throop Cat.

In this painting there are two Cindy’s.  They are framed within the shape of an unlit bulb.  The Cindy in yellow is happy and joyous beside her is a Throop cat dressed in a small shirt with a happy face upon it.

Below this Cindy is another dressed in gray.  This Cindy is stern and sad.  She types upon a laptop the words “You are only treating half of me.”  Beside her is Throop Cat again --but this time in a straitjacket.   

You see, those of us who follow Health Information technology and Meaningful Use are concerned about information access related to mental health.  I first heard speeches about this issue almost two years ago at my first Alliance for Health Reform meeting. The Alliance for Health Reform is a nonpartisan, nonprofit group; it doesn’t lobby or take positions on legislation.  But it does create excellent panels of speakers discussing very important topics within healthcare.  (They also provide box lunches.)  I registered for the event Healing Mind and Body: Behavioral Health and Reform on Friday, July 17, 12:15 PM to 2:00 at The Columbus Club, Union Station. The focus of talk wandered into a topic area I was very interested in EMR (Electronic Medical Record) access.  And unlike many of the groups I listen to, this room was deeply fractured on patient access.  We were talking about record access within the world of mental health.  And in this venue, even having a medical doctor access the same EMR as the mental health provider was controversial; forget about letting the patient have access to the information.

I stood up to ask a question in the Q&A session at the end.  I asked about my husband's case.  Could Fred have lived if our system was designed to treat the mind and the body?  Would he still be alive today if psychiatrists required full physicals and accessed that information?  Would he still be playing with his sons if he had been treated as a whole patient?

In the spring of 2008, Fred and I saw a psychiatrist every week from late January until May.  Fred had been very depressed, fatigued and was losing weight.  Our son had just been diagnosed with Autism, and he had taken that rather hard.  Fred was also very sad that although he had been an adjunct for years, he could not find a full time job.  The psychiatrist was an incredibly nice man who saw us even though Fred did not have insurance and we would have to pay out of pocket.  We talked through our problems, and it seemed to help Fred’s emotional state.  That summer Fred was hired at American, and that helped raise his spirits considerably.

In the fall of 2008, Fred was very tired and became sad again.  He said, “Reggie, I don’t understand.  I have the job I always wanted.  Why don’t I have energy?”  In January, the pain began.  In the following weeks, Fred would visit two emergency rooms and visit his doctor over a half a dozen times.  He would get pain meds but no diagnosis.   Finally, in mid-March, after the second fruitless ER visit, I would go with Fred to his doctor.  I would see that they didn’t weigh him.  When we appeared before the doctor, she would ask for the first time, “Mr. Holliday, do you think you are depressed?”  Fred looked at her incredulously. Now, perhaps this was code for “Is this all in your head?”  But I answered, “Of course he is depressed, he is in constant excruciating pain.”   

I was frustrated such a question was asked in such a way so late in the game.  My dismay continued in hospital after hospital setting.  Fred’s condition worsened, and pain both physical and emotional was treated by another drug, but rarely counseling and the arts.  I am very glad that Cindy is coming forward to walk in the Gallery and spread awareness about living with depression.  Perhaps her efforts will save a few Freds or help a few Reginas feel free to claim the insurance or type of treatment they need, and finally, we can be treated as "whole" people.

Shoot the Moon: Ted Eytan's Jacket

In January 1993, I learned a very important concept in card playing.  It was semester break at Oklahoma State University and I was spending hour upon hour playing hearts with my best friend T. J Jones and her fiancée Evan.  I was often a cautious player, but when the deck was stacked against me and my back was against the wall, I would “Shoot the Moon.”  I would either win the hand or fail miserably.  There was no in between.  At that time in my life I was only 20.  I was preparing to join the Navy and had not yet kissed a man named Fred Holliday II.  He was only 22 years old himself.   I was having trouble paying rent and was most definitely following the path of many an artist and theatre major, by failing half of my college classes.

My life was at a crossroads.  I would have to make a fateful decision, to fold my hand or to “Shoot the Moon.”  I wrote the poem below during this period.

Hearts

Though darkness is spreading all over my land,

The cards, they still could lie.

The Black Sister hides her face this night,

Not yet my time to die,

At least not with these hearts in my hand.

~Regina Hollliday

I ended up joining the Navy and becoming engaged to Fred.  Fred was very sad when I left.  I made it through boot camp, even running a mile and a half on a knee with torn ligaments.  On a sunny day in July, I graduated from Boot Camp. I was so proud to wear my dress whites on the parade field in Orlando.  Then I spent two glorious weeks with Fred on leave before going to technical school in Chicago.  I even painted a mural in the local Navy recruiting office and received a commendation.  Then, I left for technical school and darkness descended.  Both Fred and I sank deep into depression in our lonely rooms so far apart.  I did not want to fail again.  I did not want to fail in school.  I did not want to fail in love.  I wanted to stick it out and succeed in the Navy, but that wasn’t in the cards.  So, I folded.  I left with an entry-level separation for situational depression. 

I never wore my dress whites again.  I got married, and became a toy store asst. manager and a part-time pre-school art teacher.  I would support my husband both emotionally and economically for many years.  We would have two wonderful sons.  And I thought I would never march again. 

On another sunny day in July 17 years later, and I was thinking about dress whites.  It was July 13^th 2010 and I was seated on stage with another Regina.  This was Regina Benjamin, Surgeon General.  She looked vibrant and resplendent in her uniform.  Her forehead was beaded with little drops of sweat.  The HHS building was crowded that day because it was the announcement of the final rule of Stage One Meaningful Use.  Regina Benjamin was the fourth speaker the day and she recounted the powerful reason she supports electronic medical record adoption.

Here is an excerpt the words she spoke that day:

Finding My Way to Electronic Health Records

Regina Benjamin, MD, MBA

The current oil spill in the Gulf Coast may prove to be one of the great ecological challenges of our lifetime.  It is yet another devastating blow to the Gulf, a place I call home.  My heart goes out to the people in the region who are concerned about how this will affect our livelihood and our health.  While the full effects of the spill remain to be seen, already the health needs of Gulf Coast inhabitants are increasing during this time of crisis.  Physicians in the area will therefore need to adapt, and find innovative ways to efficiently deliver health care for an already underserved population.   I think back onto my journey as a physician during the crises of Hurricanes Georges and Katrina, and try to remember how I adapted. 

The day after Katrina hit, I drove through Bayou La Batre, a small fishing village on the Gulf Coast where I practiced medicine for 23 years.  The damage didn’t look so bad when I pulled up to my clinic.  However, when I opened the door, I nearly fell sick from the smell of dead fish and crabs.  Furniture had been tossed around the office every which way. All the patient information, all the paper records – were ruined.  I remember thinking to myself how I had tried to prepare for this, and recall that I had strongly considered electronic health records.  However, as for many small practices across the country, money was tight, and it eventually became a choice between the light bill and an EMR system.  Searching for a source of courage, I tried to think back to why I chose to become a family physician. 

Like many physicians just out of school, I believed strongly in primary care – my mother, father, and brother all died of preventable diseases.  As a National Health Service Corps scholar, I now had the privilege of making a difference in a small community.  

In 1998, Hurricane Georges made landfall in the Gulf Coast, causing over $100 million in damage to Alabama alone.  My clinic was destroyed.  Without a building to treat patients, for the next two years my nurse Nell Bosarge and I drove my pick-up truck to their homes.  Eventually I mustered up the resources to rebuild the Bayou La Batre Rural Health Clinic—on higher ground this time, and on four-foot stilts.  Meanwhile, we managed to save the drenched paper records of our patients by carefully drying them in the hot Alabama sun. 

In 2005, Hurricane Katrina came, again threatening to destroy the Bayou La Batre Rural Health Clinic.  We had 48 hours to evacuate the area, and given the new secure location of the building, saw no reason to pack away all of the paper medical records.   When I returned to the Bayou, the building was destroyed by the water.  Nell and I knew we had to get everything out of there, or else it would mildew.  We spent just as much time clearing out the medical records – again placing them in the 90 degree sun to dry them, carefully turning them over – as we did trying to salvage the structure of the place.  This time, I could not make house calls to my patients’ homes, because the vast majority of their homes had been destroyed, too.   Meanwhile, our staff set up a makeshift clinic in the auditorium of a local shelter, while volunteers and donations helped us prepare for a January 2^nd reopening. 

Tragedy befell the Bayou Clinic once again, when in the early morning hours of New Year’s Day, just before our clinic was to reopen, a fire occurred and the clinic burned to the ground.  This time, the precious patient records, the ones Nell, the staff, and I on two separate occasions spent precious hours drying and recovering, were now completely destroyed.  We now had to rely on memory and intuition in treating our patients.  Any information on allergies, co-morbidities, and specific family history was now left to recollection. 

Having lost the Bayou Clinic on three separate occasions – twice to hurricanes, and once to a fire – I knew we had to have a better way of practicing.  I needed to find a way to deliver high quality health care to people who didn’t have a lot of money.  From the experience with Hurricane Georges, Katrina, and the fire, I knew we had to be able to evacuate the clinic quickly, while still safeguarding the vital patient information.  Prior to that, I had strongly considered an electronic health system, but I couldn’t afford one.  However, now, I realize I couldn’t afford not to have one. 

Our trials did not go unnoticed.  Wonderful people from all over volunteered their time and money to help us rebuild.   A generous donation from the Health Information and Management Systems Society (HIMSS) supported our efforts through the Katrina Phoenix program, helping us rebuild our clinic with computer hardware in coordination with a generous EMR vendor thru the good-hearted student volunteers from Bentley College.  They also provided us with support through the processes of learning how to use the system and implement it in our practice.  Needless to say, Nell and I were relieved when we turned on the switch and became a paperless office. 

Though it is challenging to convince some doctors and nurses to convert from paper records, “buy-in” was not an issue at the Bayou, as Nell and the rest of the staff were adamant about never having to “bake charts in the sun” again.  The new system we implemented allowed us to easily track and document our patient histories, and with a click of a button we can send a prescription, or remind patients of upcoming mammograms, thus improving the quality of care.   Practicing medicine became easier for the clinicians and better for the patients. 

With the availability of new incentive payments in place from the HITECH Act, and support transitioning to electronic health records available from local regional extension centers, small practices like mine have the kind of support I did—and fewer reasons to delay a decision that was obvious from the start. 

Until the day we turned on our EHR system, I was still using pens with waterproof ink.  It is so good not to need those pens anymore.”

-Vice Admiral Regina Benjamin, MD, MBA is a Family Physician, and the 18^th Surgeon General of the United States. 

 

I was so honored to speak after Regina.  I spoke about the importance of electronic medical record to patients.  After I spoke, Regina and I exchanged contact information.  Visions of floating medical records danced behind my eyes.  I swore, someday I would paint the scene she so eloquently described.

So one month ago when I proposed the idea of The Walking Gallery, I asked Ted which story would he like to present.  He responded that he would like to wear Regina Benjamin’s powerful story.

There have been 23 men who have held the position of surgeon general acting or otherwise in the 100 plus years of this office.  There also have been four women to serve in this role.   I was pleased to learn that every woman who has attained this role in public health was a woman of color.  I wonder though if many people know their names?  I was hard pressed to think of a name of any Surgeon General other than C. Everett Coop who served in his role from 1982-1989.  I remember this name even though I heard it as a child and then a teenager.  In my mind, his name means say no to cigarettes and use condoms to prevent Aids.  And if you Google him with his titles you will get over 75,000 hits, even though he served over twenty years ago.  Regina Benjamin has been at her post for almost two years in a 24/7 digital age.  If you Google her with title to her office, you will get 70,000 hits.

Now some people say that the role of Surgeon General is only a figurehead, she has no real power.  But, I must say that using a public platform in a digital age can result in great positive change within the populace.  I would like people far and wide to hear her message.  As I painted this painting, I was saddened to how small Regina’s ripple was within the tide of social media.  So I painted her reflection in the water as indistinct with only the smallest hint of her dress whites in the water. 

A scene of tragedy lit by the moon.  That is what I painted for Ted.  I painted a Doctor who when all seemed lost would not give up.  When the darkness was spreading all over her land of Bayou La Batre, Dr. Regina Benjamin decided to “Shoot the Moon.”  She would either fail miserably or she would succeed.  No great change is possible without the chance of great failure.  Now, I hope that Regina brings her wit, passion and fortitude to “Shooting the Moon” in the world of medicine and social media.

I am happy that shall I march again.  I shall march with Ted Eytan at my side.  We will both be spreading messages as part of a movement.  That movement is The Walking Gallery and we are redefining the meaning of mobile health and data access.