Monday, August 29, 2016

Elliott

Once upon a time, a mother and father welcomed their baby daughter into the world.  They named her Elizabeth, but for most of her life she was known as Beth.

Beth's parents were history professors and as such, enjoyed traveling to various places around the world to study history.  When Beth was only six months old, her parents went to England as part of their sabbatical (period of leave granted to professors every 7 or so years).  They took Beth and her older brother with them.

While in England, Beth got sick, developing a fever of 105.  Beth's mother was somewhat frantic.  Surprisingly, the doctors who saw Beth were not frantic at all.  Because of this, Beth's parents purchased private health insurance to try to get help for Beth beyond what was covered as part of the English system.  Once a private doctor saw Beth, she was put on antibiotics and quickly got better.  To this day, Beth knows her life was saved in this manner.

Many years later, Beth was diagnosed with multiple sclerosis, or MS.  Beth tried to understand this.  She was so young to get this diagnosis - why?  Beth's search led her to discover that infants who traveled to a certain latitude where they were not born were more susceptible to MS.  Further, Beth discovered that many people with MS recall, years prior to their diagnosis, getting very sick with a fever.  Beth put this combination together - she was very sick in England.  She wondered what if she had received more timely care and had not been sick?  Beth doesn't tend to live much in the "what if?" land, but she keeps this in her mind.

Beth's great aunt and uncle lived in Toronto, Canada.  Beth has fond memories of visiting them, and what a great person her uncle was.  Beth's uncle was diagnosed with prostate cancer at a relatively young age.  Because he lived in Canada, he had a long wait time for additional tests regarding his prostate cancer.  By the time he had tests done, it was too late and the cancer had spread.  He died because it was too late to receive treatment.  Years later, a close relative of Beth's also developed prostate cancer.  He sought aggressive treatment in the US.  He has lived 8 years since being diagnosed - 7 years longer than Beth's great uncle.

Once diagnosed with MS, Beth wasn't sure what to do with her life.  She was only 20 and in college.  She got a double major in math and honors economics.  And Beth knew she wanted her career centered around healthcare.  Beth sent over 20 letters to healthcare organizations throughout the US, asking about potential jobs.  She received many disheartening letters in response to her inquiries, until one day she received a letter from the Mayo Clinic in Minnesota.  Beth started her career at the Mayo Clinic, working in the biostatistics department as the analyst for a study on stroke prevention. Beth knew she belonged in Colorado, so after 3 years, found a job as a pharmacy analyst with Kaiser Permanente in Colorado. 

Once back in Colorado, Beth navigated through many departments within Kaiser.  She started as an analyst in the pharmacy department, found she liked a statistical software which brought her to the computer side of healthcare when it was just starting.  She spent time in the research department at Kaiser, and then more time on the computer side of healthcare, trying to figure out how data from an electronic medical record could be turned into meaningful and useful information.

But Beth liked change, so she deviated from the computer side of healthcare for about 6 years, and took a position where she was responsible for answering any questions employer groups had regarding either healthcare quality or clinical care.  These 6 years gave Beth a great knowledge of the healthcare system.  Coupled with background on the computer, or technical, side of healthcare, Beth's knowledge of healthcare was extensive.  She was told she needed to get a masters degree, which did - in public administration, but focusing on healthcare policy.  After receiving her masters degree, Beth left Kaiser for 3 years to explore the walls outside of Kaiser and to see what more she could learn of public policy.  She learned a lot during that time about differences in payments between commercial insurance, Medicare, and Medicaid.  She recently returned to the computer/technical side of Kaiser.

So you see, Beth has spent her whole career in healthcare.  Beth has also had MS for over half her life, and has a unique view from that perspective.

But Beth struggles with a problem. After almost dying as infant, spending over half her life with MS, and spending her entire career in healthcare, she doesn't feel people listen to her.  People want universal healthcare and list a bunch of reasons why. Beth tries to explain, given her background, why she doesn't feel it is a good idea.  She feels her thoughts are not heard. What she finds most painful is the fact that no one really thinks about the fact that she almost died. She also finds it painful that given her background, people still don't listen, or don't acknowledge any of what she says, despite the fact that she acknowledges what they say.  She doesn't understand why no one listens.  She doesn't understand why no one acknowledges that she very well could have died.

Who is Elliott and how is Elliott involved in this real-life story? Elliott is Pete's Dragon in a fictional story-turned Disney movie.  Beth, always a kid-at-heart, took her husband to this movie this past weekend.  Beth found herself drawn into the imaginary world and coming out of the movie consumed with Elliott.  You see, Elliott was a dragon who was invisible except to Pete and sometimes other people.  When Pete, a kid who lived with Elliott, was found, some people were interested in finding and capturing Elliot.  People did capture Elliott.  Elliott just wanted to go back to where he lived - he just wanted to be alone.  He knew the world so well and didn't want people to attack him - he wanted to live in peace.  And in the end (spoiler alert!!!!!), Elliott did just that.  He escaped from people and left to live life on his terms, invisible to humans, and valued as the dragon he is.

It's such a "Disney" story, yet Beth felt drawn to it.  If people will not listen to her, and if she feels a bit attacked, her tendency can be, at some point, to retreat away from the people causing her pain.  And so, Beth has been spending time away from the places she finds painful.  She has been spending time working, taking her daughter to many activities, and so on.  And to go back to where those people are?  Unlike Elliott, Beth will go back, painfully knowing she doesn't feel her opinions are valued, and questioning why.

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Somewhere God is in here, but I can't figure out where.  God, where are you?  Walk me through this.

Peace.