We've just been handling the episodic hospitalizations quietly on our own. It's interesting to see our Cousin Dan share his amazing story of caregiving in the setting of Alzheimer's. So much of what he says I can identify with -- chronic illness is a messy, horrible thing. Especially when you know things will only get worse. The worry, stress, concern, anger, disappointment... is this what I signed up for???

The entire gamut of emotions on top of the fatigue can be daunting. And even harder when your best friend - the person you'd like to rely on for comfort/strength - is the one who is sick. 

Just remember to take care of yourself.
Just remember to take care of yourself.
Just remembers....

Perhaps if I say it enough... #FeelingSomeKindaWay

 ​In my first blog of 2017, I recounted the story of finding my husband unresponsive on the floor the day after Christmas. When he finally came to, he reluctantly agreed to let me get a wheelchair from the hotel lobby.

After settling him into the car, I asked, “which hospital do you want to go to?”

What seemed like a very straightforward question at the time was, upon later reflection, one that demonstrated a major issue related to healthcare access.

1. Insurance – While insurance provides folks a degree of coverage it also can impose restrictions that limit options related to where people can seek care. Some are forced into networks with limited access to specialists or with doctors that are culturally insensitive.

They may not even feel empowered to seek medical attention! The  Affordable Care Act (ACA) is not perfect, but it is a first step towards providing all US citizens with basic coverage. There are many parts that need repair including prohibitive copays levied by insurers, but allowing citizens to go without coverage leads to cost-shifting and burdens the healthcare system, ultimately leading to higher costs. Click here to contact your legislator and petition them to save the ACA. 
​
~One Drop of knowledge

I rushed him to the hospital.

​Our experience with the healthcare system was stressful and anxiety-provoking. Gratefully, Jeff recovered and went home. However, the experience left an indelible impression upon me about the challenges patients face when participating in our healthcare system.
 
I am a physician and my husband is very invested in his health, yet we still struggled to navigate and feel heard. Over the next few weeks, I’d like to explore some of the barriers we faced and see if we can come to some solutions together. Are you with me?

~One Drop of Knowledge

The movie "​12 Years a Slave" aired on BET Network tonight. I have always made a conscious effort to stay away from movies that depict the brutality of slavery. To think that human beings could treat other humans with such cruelty makes my heart pain. Despite the accolades and award-winning casts, I never saw the movie Amistad or watched the mini-series Roots. 12 Years was no different – I just couldn’t bring myself to open myself to the emotions that might surface.
 
My first opportunity to watch 12 Years was in 2014 on a flight to Botswana. I decided not to watch, fearing how I might react, especially being confined on a plane for 14 hours. Would I cry uncontrollably or scream from the top of my lungs?!? I was afraid of feeling alone and vulnerable on that long international flight.
 
As a flipped channels tonight, something forced me to stop at BET and to watch 12 Years. Over the past two weeks I have spent focused attention on modern day medical atrocities performed against blacks. . Eugenics, J. Marion Sims, radiation experiments, and Tuskegee – experimentation by the US government that ended a few years after I was born!

Today, I am on the Hill meeting with legislators as a representative of the American Society of Clinical Oncology’s Health Disparities Committee.  The fact that the Capitol Building and many of the federal offices and workspaces were racially segregated less than 100 years ago is not lost on me.  I stand in these marbled halls, built with slave labor, humbled that so many who walked these floors before me, paved a way for blacks to be heard by and be involved in our government.

By now, most people have at least heard of the movie “Selma”.  While the movie was not a documentary, it depicted a critical turning point for the Civil Rights Movement that many had forgotten about or perhaps were unaware had happened. If the movie had not been released, I wonder how many would have even known about the 50th Jubilee recognizing the events that occurred on “Bloody Sunday”.

There is so much attention on Martin Luther King, Jr. that other significant leaders of the Civil Rights Movement are often overshadowed.  Don’t get me wrong – MLK, Jr. was a remarkable man and a gifted writer and orator.  He did GREAT things.  Yet do you remember who led that first march over the bridge in Selma??

The week prior had already been difficult, with the shooting death of a 44yo cardiologist at a local hospital who also happened to be my classmate’s husband. A subsequent email from the Chair of my Department reporting the tragic death of my colleague’s husband who died suddenly while on a business trip in Florida – he was 42.  

Nothing could prepare me for the news I was about to receive: 

                                                      My friend’s 14-year-old daughter had died.

It took about 24 hours for me to summon the courage to call.  When we spoke, mom told me that she had gone in to wake her daughter for school and found her unresponsive. Dad tried desperately to revive their baby; he continued CPR until EMT arrived.  She was declared dead upon arrival to the hospital.

Today, I am worn – physically, emotionally, mentally, and perhaps even spiritually.  Burdened as the eaves of the structures bearing the heavy snows.

Café.  We sat down at one of the high-top tables along the atrium windows that look out onto the Bulfinch Building and lawn – the original hospital façade.  Two minutes later, we heard loud shouting.

“LEAVE ME ALONE!!  LEAVE ME ALONE!!”

The voice was getting louder and louder.  A hush came over everyone in the lower section of the atrium – almost a palpable fear.  I looked up the open staircase to the level above and saw a man and his wife holding on to each other as they stood back – waiting.  I couldn’t see anything else, but could still hear the man yelling:

 “LEAVE ME ALONE!!”

As a physician, my first instinct is to help people.  However, for the first time, I hesitated. My initial instinct was overshadowed by fear.  I didn’t think the news I’d heard early impacted me, but I found myself debating whether to go and see if I could help. Surely, security would handle the situation, but this fear left me feeling uneasy and vulnerable sitting in that open atrium right along the window.

When I came home that evening, the evening news announced that a physician had been shot during the active shooter situation  at my sister hospital earlier in the day.  He had been taken immediately to the OR but was still in surgery – not a good sign. Was it someone I knew? They were not releasing the victim’s name.

At 10:45pm, I received the following email from BWH President, Dr. Betsy Nabel:

My heart fell.  Not only had Michael and I started at BWH together in 2006, we overlapped at Duke Med from 1997-2001. He was dating and ultimately married one of my medical school classmates! My heart goes out to Terri, her 3 little children, and the rest of their family.  What an immense tragedy. This is a devastating loss for his family, the hospital, and the medical community.  

Most physicians go into medicine because they are truly dedicated to caring for people. With increasing educational debts, changing reimbursements, inability to make appropriate clinical decisions due to restrictive insurance policies, and a spiteful, litigious society, it’s a wonder anyone still chooses to be a doctor. 

Let me briefly share a few medical “highlights” from the year.  My daughter was on track to graduate from college in May 2014, but became quite ill at the end of 2013.  She took a medical leave, returning home to endure 2 surgeries and countless appointments with doctors from at least 4 different specialties. Emotionally, this was an interesting time for me since there was some pre-existing mother-daughter tension.  I must say that having her home was indeed a blessing. While she recovered physically, we both took steps to heal our relationship.  It was great!! 

Perhaps my husband wasn’t getting enough attention or felt a bit left out. In 2013, I wrote a blog entitled Walking a mile in their shoes, where his predisposition to foot ailments was mentioned.  Well, the foot problems returned and worsened! Just after our daughter left for school, my husband went in for a surgical procedure. Let’s just say things didn’t go as planned and he has since undergone 2 additional surgeries and is still recovering.

I share these few medical issues, not even exploring the emotional and mental challenges, so that readers, whether new or returning to this blog, know that I understand the difficulties that some face related to health and wellness.  For my family, things became so challenging that I couldn’t find the “space” to write.   I even tried going to a counselor to help me sort through the mental clutter but found the experience less than helpful.

As I am finishing up a 20 day fast, part of an annual consecration and renewal encouraged by my church, I here and now recommit to writing this blog regularly. I recommit to fully developing this forum so we can openly discuss the issues that impact the health and wellness of our communities. #racism. #inequity.  #Ferguson. #EricGarner. #itooamHarvard. #TrayvonMartin. #bigotry. Let’s have some healing conversations.

Will you engage with me?

                       ~One drop of knowledge can ripple through an entire community~