Reporting on Fear – Keep calm and turn off the news

Ebola is a dangerous disease.  It’s the stuff of horror movies.  Vomiting blood, bleeding eyes, liquid bowels.  It’s scary.  There have literally been books written about how dangerous this disease feels.  Here is a well written one: The Hot Zone  http://smile.amazon.com/dp/B007DCU4IQ/ref=cm_sw_r_tw_dp_txyvub10YPTFM

It’s also pretty easy to quarantine and control.  You aren’t contagious when you aren’t sick.  That is a huge win for public health.  It’s pretty easy to ask people to take their temperature every day and wash their hands.  When someone isn’t projectile vomiting on you, you are not going to be sick by being within 40 feet.  You aren’t going to be sick from a sneeze on the subway. 

But wash your hands and be careful about your contacts after being in contact with Ebola patients doesn’t make good news.  Reporting is about selling fear.  Pay attention to the news or you will die gets a much bigger audience then this is a cool story.

Our medical professionals who are literally putting their lives on the land to volunteer in Africa should be treated as heroes, not prisoners.  But Ebola is in on backyard sells papers.  Nurse is still healthy after serving in Africa is less so.  A daily log of her temperature isn’t riveting news. 

Nigeria had a handful of cases of Ebola after an infected traveler arrived.  They implemented immediate hand-washing stations outside of buildings.  People waved instead of kissing for a few weeks.  The chain of infection stopped quickly.  They are now once again Ebola free. 

There are a lot of people who live in fear of the end-times.  This isn’t it.  Be calm and turn off the news!

Feeling Helpless when you are use to being Helpful

I’m someone who always has to be busy.  My hands and my brain just always need to be engaged.  Even at night I’m usually listening to an audiobook while I’m settling into sleep.

Two nights ago my back twisted into a giant ball of pain.  After a long day I finally found an effective pain medicine and my back relaxed back into position.  But I still needed to relax and rest today.  Usually that’s a normal Saturday for me, but today a friend came over to help me clean.  I just wanted to reach in and help.  I hated just sitting there.

Then I reflect back on this last week.  An acquaintance of mine is in the same Neuroscience Intensive Care Unit where my dad spent the first month after receiving his brain tumor/cancer diagnosis.  My brain immediately spun into helpful mode.  I even tried to pay a visit, and realized that I was there for me, not him.  I sat in the waiting room for a while and it was cathartic for me to remember this period of time and mentally thank all of those that people that helped us then.  It was also a good place to remember how God carries you through those most turbulent days.

God uses us as hands to help people through those rough patches.  We need to be willing to help.  We also need to be willing to accept help when things get beyond us.  My heart failure requires me to pace myself, but even while walking slowly through my life, I can reach out a hand and help.

The power of a label, jumping to the wrong conclusion

When you know that you are sick, but all the tests come back negative; it's a very frustrating place to live.  But our modern medical system doesn't allow for diagnosis unknown.  Every interaction between a patient and a provider requires a procedure code and a diagnosis.  Thus doctors are required to work under a presumptive diagnosis.  Within 30 seconds, most doctors have labeled a patient.

And it's these instant labels that are the problem.  If a doctor labels a patient as a drug-seeker, he may never ask the questions that say why she is in so much pain.   My balance problems were written off as a drug interaction, until I had insanely overactive reactions to a vestibular eye motion provocation test.  When I was in the emergency room with chest pain and trouble breathing, I'm sure the instant diagnosis was panic attack.  Luckily the doctors followed the heart attack protocol and my second cardiac enzyme test came back positively.  With a bedside echocardiogram, they found significant heart failure and I was in the hospital for 2 days of observations and testing.  It would have been an easy miss, and if I went home and assumed the shortness of breath as asthma; steroids and albuterol would probably have further trashed my heart.

Now all of us use these instant labels in real life.  Instant classification is encoded deep within our brains.  Its learning to push yourself past these labels and identify the real person inside that can be a challenge. The black teens gathered on a street corners are presumed to be discussing drugs and not calculus. A teenager playing with smoke bombs and explosives will either be classified as scientific prodigy or a troublemaker depending on their looks and history.

And all too often a teacher will classify a student almost instantly, and will shape their interactions with the student based on this label.  Your brother was a slacker who never worked hard, so I don't expect you to succeed.  Your sister was a star student, I'm going to give you the benefit of the doubt and really push you to your best.

And if these labels are based on the color of your skin, your ethnic heritage, your financial background or even your looks, you are going to deal with these labels in every interaction with a new individual.  Having to wash off that label with every interaction in your life is exhausting.

If you are a white male who graduated from a fancy ivy league college, you're assumed to be a competent, intelligent individual until proven otherwise.  If you are a black student at the same fancy college, it's presumed you didn't really earn your place.  If you are an attractive woman in the workplace, it's assumed that you are eye-candy and not a professional.  If you are obese, you are labeled as lazy and stupid.

It's these labels that make an individual's path through life either a stroll down the boardwalk, or an uphill climb.  And while I have a lot of the positive checkmarks, even overcoming one stereotypical label can open your eyes to the lives of those stuck with labels that can't erase.

So take time to get to know someone new in your life.  Whether it's at church, at work, at school or a neighbor; learn who the person is and move past that label you stuck on their chest.

I'm good at what I do. PAY ME!

Somehow it has become the norm in this society to ask individuals to do their work for free or a very minimal wage.  Often the temptation of "exposure" is supposed to substitute for the fact that you don't make any money.  We no longer have to live on love, now we have to live on exposure.

If you work as a waitress, the restaurant will pay you $3/hr and expose you to restaurant patrons who are expected to pay for your services as well as their food.
If you are a college student, you are expected by Federal Financial Aid formulas to make several thousand dollars each summer to contribute to your education.  Future employers however, want to see that you've worked as an unpaid intern for the experience and exposure to the real workplace.

Colleges feed the adjunct system with the idea that people will teach for almost nothing for the exposure of leading a class which will be good for their resume.

Minimum wage is set at a level that is half of the living wage with the idea that this is a "training wage" that individuals will get for a short period of time until they have exposure to the workplace.

Freelance writers are expected to write for free for exposure of their work to a larger audience.

All of this exposure is a lot closer to the victimization of pornography, then a legitimate on-ramp to the professional world.   Just like a lead in XXX films is unlikely to lead to life as a main-stream movie star, taking any of these positions puts the taint of desperation on your resume.

Right now I'm living in that gulf between minimum wage and a living wage.  This is a horrible place to be, especially when I consider myself a talented professional.  

Lets STOP expecting people to work for free for exposure.  And shame on bio-online for calling dnlee a whore for asking how much she would be paid for writing a guest post.  Maybe that word jumped to mind so fast since they knew they were the pimps trying to peddle exposure instead of money.

#iammargaretmary and choosing not to be an adjunct

Before Dad got sick, I was interviewing to be a tenured-track professor in Chemistry.  I'm glad I didn't get any of the jobs because I wouldn't have been an effective teacher and a supportive daughter during the cancer.

But one thing I really did learn when I was interviewing around the country was the dependence on adjuncts, even in small, remote, liberal arts colleges.  I also talked to women who were mourning that they waited to have children until they got the brass ring of tenure.

If we really want to know why women and minorities are under-represented in the privileged world of the tenured professor, we only need to look at how many drop off the elitist path to greatness.

Graduate school programs are relatively easy to enter.  Graduate universities depend on students to teach the masses and to run the research in their labs. Graduate students are usually earning poverty level wages, while doing 60 hours or more per week in the lab and classroom, then going home to grade papers.  While having your lab students finish the PhD is an important checkmark in the tenure track file, students are cheap and the 3-4 year PhD program often extends to 8-10 years.  These aren't high school drop-outs, but students who have already earned a Masters degree and our doing the high level research that fills the academic journals.  And living in poverty.  Coming from a white, suburban background, my parents were able to help with medical and vehicle expenses and subsidize my time in grad school.  I gave up a good paying professional job, and lost over $40,000/year in opportunity costs.  But that's ok, when you graduate you'll get to be that professor right?  For someone without family support, living in poverty while your friends from college are earning a good income is a hard choice.  Of course, since the recession, more students are fleeing to graduate school rather than facing unemployment.  Too bad when they graduate they face: The Adjunct

Adjuncts get paid $1500-$4000 per course and our part time teachers at colleges, thus not eligible for any type of benefits.  Many adjuncts work at 3 or more schools to put together a living salary.  Adjuncts perform the same basic role as teaching assistants, but work at community colleges and other colleges without a pool of grad students to teach.  At many community colleges 70-80% of courses are taught by these part-time no benefit positions.  Many adjuncts begin by thinking, if I adjunct for a year or two I'll be a sure thing for the opening when Prof X retires in a few years.

But adjuncts age badly, the freeway flyer is not a true colleague, she doesn't have time for leisurely office chats, long lunches or Friday happy hour.  She probably doesn't even have a desk, let alone an office.  She arrives a few minutes before class and leaves immediately after.  She has other classes to teach off campus, no time or resources for new research and probably a parking problem.  And that tired, frazzled adjunct can't compete with the shiny, new PhDs with fresh publications and time to craft and practice a fancy job talk.

So the small department has a pool of permanent adjuncts that may get a formal interview, but probably will be forced to smile and play nice with the bright new star that the college hired for the new tenure-track line.  Or even more likely, all of the candidates will be sent a letter to thank them for their time, but the university has decided not to fill the tenure-track position at the time.  But if you are interested 6 more courses are now available and they are looking for adjuncts.

Rest In Peace: Henry Edmunds Davis

It's been a long seven months, but Dad passed away at 3:45 pm today.

Lots of things haven't processed through my mind yet.  The mechanics of death are whirring away, the hospice nurse pronounced at 4:15 pm.  The funeral home has removed the body.  Hospice disposed of the medication, the medical equipment company will clear out the stuff tomorrow.  Cremation will occur in a couple of days after the coroner has signed off on all the paperwork.  We'll have a memorial service in Mid-May when we are ready to celebrate his life.

We don't want lots of flowers in the house, plant some native wildflowers in your yard.  If you want to make a donation please consider:

UUMAC: The Unitarian Summer Camp that dad was president of when his tumor was first diagnosed 5 years ago.  This camp has been an extended church family for both my parents.  http://www.uumac.org/wordpress/scholarship-donations/

Musella Foundation: VirtualTrials.com is an important advocate for brain cancer research and helped support the research that gave Dad a great quality of life for most of the past 5 years.  http://www.virtualtrials.com/

Close to Home ... A hospice murder/suicide

Yesterday something far too easy for me to imagine happened less then 2 miles from my home:

http://www.mcall.com/news/breaking/mc-allentown-lehigh-valley-hospital-murder-suicide-20130319,0,2694606.story

A couple who had been married for 64 years, husband killed his wife who was being forced out of inpatient hospice after only a week.  He then shot himself.  She was basically blind, paralyzed and in terrible pain.  She was in hospice, but she had temporarily stabilized.  Inpatient hospice doesn't like to house patients for more then 10 days.  So he was told he had to find someplace else or bring her home.  He felt he had no choice but to end everything for both of them.

And here we hit a lot of personal experience.  When Dad was first diagnosed with his Brain Cancer, he spent almost a month in ICU, finally received his surgery after we initiated a transfer to a university hospital, and then returned to a nearby rehabilitation hospital.  One week later he was home, and 2 weeks after that he was discharged from outpatient physical therapy.  He was then able to do chemo and radiation on an outpatient basis from home.

When this tumor recurred last August, we envisioned a similar plan without the long initial stay in the ICU.  Unfortunately, Dad wasn't getting better.  And even more unfortunately, everyone we met that was involved in "discharge planning" was less then useless.  After tracking down a social worker who was probably covering 25-50 patients, you were thrown some brochures, a bunch of forms with tons of detailed financial questions, and oh yeah, medicare says we aren't allowed to make any real recommendations.  The bewildered family (if there even is one) is forced to try and wade through the difference between assisted living, transitional living, acute rehabilitation, long term rehabilitation, sub-acute rehabilitation, nursing home care, hospice, home health aide, visiting nursing, private duty nursing etc.  All those terms give me a headache now, let alone when you want a safe (and affordable) place for your dad to be, TOMORROW.  Me and mom did the hasty tour of a dozen local nursing homes with no notice in two days.  I wouldn't make any major decision that quickly, but you want me to send my dad someplace with a 15 minute tour and whatever information I can gather on-line.  Oh yeah, and this is with the denial and heartache of someone that is this sick to begin with.  Really bad idea.

When we first realized that dad was this sick, and not likely to get better; we brought up the idea of hospice. And I must admit that my family thought of hospice as a place.  Someplace that dad could go, that would be similar but not a hospital.  Some PLACE where he could get the care he needed to ease his last days.  What we discovered was that the place in hospice is almost always the home.  And home hospice care is limited in scope to providing a small amount of daily assistance, not the round the clock that a truly helpless person needs.  While inpatient hospice certainly exists; it is for an acute transition or respite care (up to 5 days).  It isn't a place where someone can ease away their last few months in care and comfort.  And while medicare language discusses physical therapy in a hospice context.  You are quickly told that this is strictly about safety, how to use a hoyer-lift, pick up falls, etc. and not at all about the comfort or self-care of the sick individual.

And like so much else in healthcare in this country, a dedicated caregiver is assumed.  Someone who can step in and provide the round the clock care needed to send someone, that might otherwise be in intensive care, home.  Even without life-saving intervention, there is still a great deal of comfort care that goes into daily patient care.  And when we were investing nursing homes, we found out that the average patient even at a good home, receives less then 1 hour of attention a day.  That's one hour, to feed, dress, bathe, change clothes/bedding/diapers, dispense medications, move/rotate the patient to prevent bedsores, and provide comfort and companionship to a frequently very confused individual.  In home hospice, we also get about this hour of day from an aide and/or nurse.  And while these have been great, there is still 23 hours where the family is taking care of the patient.  Dad doesn't usually wait for a nurse to fill a diaper, throw up, break into a fever, need feeding/water/blankets moved, etc. etc etc.  Most of this has fallen to my mother.  Who is providing all of this care, while not always sleeping well herself, and DEALING WITH THE FACT THAT HER HUSBAND IS DYING.

I can really sympathize with this husband in ending the pain and suffering for him and his wife.  And I really hate a health care system that can leave someone feeling that it's their only option.