Wednesday, December 31, 2014

Pity Party Protocol

Twas the night before New Year’s Eve and all through the house,
 not a creature was stirring except New Year’s Day Louse.
  Since I’ll be alone without even a kitty,
 he told me that what I should feel is pity.
Choosing a new year that is healthy and hearty,
I decided to throw a pity party.
Writing bad poetry is not my only skill.
I think like Martha Stewart when I am ill.
This will never show up on my resume,
But it gets me through every holiday.

Many people are alone on the holidays for a variety of reasons from a lack of cash to a lack of transportation to a lack of friends or family nearby after a relocation.  Then there are people like me, bookworms and workaholics who just don’t stop to look at the calendar or plan well.  Those in this group who rarely watch TV are startled to learn that thousands of people will once again be standing out in freezing weather to watch a ball drop or some equally mindless event.  Thousands and thousands of people.  Happy people.  Oh, groan.  Oh, moan.  Oh, oh, oh.

I was introduced to my first pity party, the one that set the bar back in the 1950s and 1960s when I watched a movie, Magnificent Obsession.  It was so romantic that I just had to read the book that was written by Lloyd C. Douglas.  I never forgot the book and seem to be one of the few people who remember him because, due to a number of coincidences that he is often criticized for having in his books, I was asked to write the article about him for The Dictionary of Midwestern Literature.

When I was diagnosed with a potentially blinding eye disease, I was immediately reminded of Helen Hudson, one of the main characters in this magnificent book.  Mrs. Hudson, a young widow, loses her sight because of a brain injury.  The young rogue that causes the accident turns his life around, becomes a brain surgeon, and restores her sight.  I just happened to move to Ann Arbor, Michigan, the city where I had my five eye operations, when I received a phone call asking me to write the dictionary article.  I just happened to start my research in a University of Michigan library right across the street from the First Congregational Church where Lloyd C. Douglas was a minister for several years, the site of the Douglas Chapel.  I also attended a low vision support group where the facilitator told me that while Douglas’ book was fiction, it was based on a true story.  His father, a doctor, and his mother, a social worker, were best friends with the couple Douglas wrote about.  Coincidences seem to thrive not just in Douglas’ books but also in Ann Arbor.

What did I learn from Helen Hudson?  I learned the old way of looking at people with disabilities and the old way people with disabilities looked at themselves.  This is a tradition that needs to be broken.  First, I will show you the bad pity party recipe demonstrated in Douglas’ book:

1.       Think of yourself as a burden on everyone who knows you and the entire universe.
2.        Feel sorry for yourself.
3.      Isolate yourself from society by running away to a place where no one can find you even if that is behind a locked door with the phone turned off.  Invite just one person to your pity party, preferably a registered nurse who is an outstanding comforter, coddler, and hand holder.
4.       Think about how much better the world would be without you since flight is so much easier than fight.
5.      Wait to be rescued by a millionaire.

I am not rejecting this recipe entirely.  It is a good indicator, like high blood pressure and anxiety attacks, that you need to pay attention and start taking care of yourself.  After they totally exhaust you and you ask the all important question, “Now what do I do?” you can turn to the following instructions:

1.         Choose a place where you can find real solitude.
2.      Do not invite anyone else.
3.      Shop for your favorite food that will last 1-3 days.
4.      Choose four or five books to keep by your bed.
5.      Select four or five CDs.
6.      Eat when you are hungry.  Sleep when you are tired.  Listen to your inner voice.
7.      Conclude your pity party with a refreshing shower or soothing bath.  You earned it—and really need it.
8.      Clean up your mess.

Hints:  The books you choose should include parts of The Bible where you will find words like, “My God, my God.  Why have you forsaken me?”  You can then advance to self help titles and topics such as how to start controlling the people who are trying to control you.  You will know that you are recovering from your momentary bout of depression when you can pick up a silly romance about a librarian who is tempted by a variety of men who want to thaw her until she falls for the one with the motorcycle, marries him, and lives happily ever after.  Your CDs should include The Blind Boys of Alabama singing “Nobody Knows the Trouble I’ve Seen,” a selection of Broadway tunes such as “Climb Every Mountain,” and good rock and roll for your grand finale.  When you start singing like Elvis, “One for the money.  Two for the show.  Three to get ready.  Now go cat go, but don’t you step on my blue suede shoes.  You can do anything, but stay off of my blue suede shoes,” you are ready to unlock the door and turn the phone back on.

A pro like me can plan, enjoy, and complete a speed pity party in time to find the address book, locate a friend who also just turned her phone back on, call a cab, and join the crowd or just curl up and watch the ball drop on our own TVs and chat while munching on chees and crackers and mini sausages and reminding each other how next year is going to be better than this one.  Even when next year is filled with uncertainty, more medical appointments, and some lonely times, we can choose to face it with hope, humor, and gratitude and, of course, love what is left.

Monday, December 29, 2014

Seeing Eye to Eye: Strugging with 21st Century Medical Ergonomics

Remember the days when doctors were literally and figuratively in your face?  You were the center of attention.  Now you must compete with computer screens that are in every examination room.  These devices are as annoying as the mobile products that children from every age group are carrying with them.  The urge to scold, "Look at me when I am talking to you,” is so very tempting.

Doctors over the age of 50 do seem to have better interior decorators or still get a thrill looking at their patients because the tables holding their computers are usually next to the patient's chair.  The doctor only needs to move his head a little to the side and back again to view both the computer and the patient.  The new kids on the block usually have their computers and tables on the adjacent wall.  This arrangement requires that they swivel their entire body around when they want to face their patient.  They normally do not sit facing the patient and swivel around to the computer.  Their focus is most often on the computer with their side and back to the patient as they occasionally look over their shoulder in the patient’s direction.

It is almost comical watching the younger doctors talk-swivel-type/type-swivel-talk for fifteen minutes minus the actual exam if there is one.  It is no laughing matter, however, when these medical acrobats make typing and judgment errors caused by fatigue or interruptions.  The pocket mini-cassette recorder that doctors used for dictation was much less intrusive and more accurate since records were transcribed by professional typists.   Even speech recognition software might be less intrusive and more accurate than the system in place today; but after experiencing computer crashes, I wouldn’t recommend it.

Older doctors seem to be as distrustful of computers as I am.  They will say, "This information is on the computer....  Is this correct?"  Sometimes it is not such as the time my primary care physician found a new disease listed that I did not have.  Another doctor checked with me when he found information that was new.  He was tracking changes made to his patients' records.  Younger doctors, like younger computer users, tend to believe that what they read on a computer screen is correct.  They are timid about changing anything.  If computers are networked, it does not mean that the information that one doctor puts into the system or removes from the system will appear on all computers in the network.  Why not is just one of those computer mysteries usually blamed on human error.  The most difficult information to remove seems to be the name of a medication that has been stopped by a physician or a patient.  Over and over again, I will be asked, "Are you still taking X, Y. and Z?" even when I have said, "No, no, no," month after month.  Computers have not only intruded upon office communications, but they have even changed office policy.  It is now a requirement that numbers such as blood pressure be typed into the computer by a nurse or technician before a doctor can talk to a patient.

I had many odd jobs as I worked my way through college including executive secretary, transcriptionist, and typist.  My typing speed is so fast that my computer sometimes cannot keep up with me and letters don't get capitalized.  I know that when I get tired or have been doing too much multitasking, I make mistakes.  I got so burned out one day that I could not remember where the letter, "a," was on the keyboard until I took a break and let my mind clear.  I have observed the leisurely way older doctors move from their patients to their keyboards.  They almost seem to be moving in slow motion.  They are so relaxed that you wish you could bottle whatever they have inside of them and take it home with you.  The younger doctors are more frantic and seem to be intimidated because what they are typing can be read by a patient looking over the doctor’s shoulder.

Even though I lack central vision, I still appreciate a doctor who talks to me face to face.  I appreciate even more the ones who ask, "What do you see when you look at me?"  I appreciate the doctors who apologize when they keep me waiting long after my scheduled appointment time and allow me to say, "You are always worth waiting for."  I appreciate the time that they take to do a thorough examination even if they take more time than office policy allows.   These men and women make sure that their surroundings and office machines do no harm.  The new kids on the block are being blocked from communicating with their patients on a traditional level.  They will have to be broken in or they will be broken by the technology that is harming some of them.  I hope the older doctors will teach their younger colleagues traditional communication skills and decorating methods.

Meanwhile, one patient, Nancy Davis, became so frustrated with the modern health care system that she wrote a book for patients like me, Lean on Me:  Ten Powerful Steps to Moving Beyond Your Diagnosis and Taking Back Your Life.  As Davis points out, patients no longer see eye to eye with their doctors or lean on them as they did in the past.  Her concerns and mine indicate that there is a major lack of trust now that all aspects of health care are being dominated by technology.  For once, I will say that technology is not the problem, ergonomics is.  Minor changes in the arrangement of furniture and computers in examining rooms, testing rooms, and operating facilities can be made to restore what is left of traditional health care.  Thanks to Davis, as I transition to a new generation of doctors, I am becoming an even more active participant in my health care and only work with those with whom I can see eye to eye and make full use of what sight I have left.

Tuesday, December 23, 2014

Did the Moon Hit You Eye Like a Big a Pizza Pie?

While trying to enjoy what I had left, I was interrupted by the one and only research question that ophthalmologists have ever asked me.  No, it is not "Did the moon hit you eye like a big a pizza pie?"  Forty five years ago, the only question I was asked was, “does anyone in your family have this condition?”  For the last 20 plus years, researchers have expanded their range and have been attempting to prove that either heredity or environment causes many eye diseases.  The last time I heard there was still no definitive answer.  I don't believe that any research question has taken the romance out of relationships and caused the decline in marriages and births more than the question of heredity.  It was quite upsetting when I told family members about my disease and the doctors' concern that such diseases might be hereditary to learn that people immediately jumped to the conclusion that they should not have children rather than that all children should be screened, diagnosed, and treated early which I was not.

By focusing on the heredity question, researchers have learned that certain diseases are found more often in certain populations, but they have not discovered why these diseases only appear in certain people or at different times in each person.  Why, for example, do some people develop cataracts at birth while others develop cataracts in middle age or later?  Why do some members of a family have a particular disease while others with the same DNA do not?  Rather than looking at either heredity or environment, I would like researchers to consider both simultaneously and ask patients the following questions:

1.  Was general anesthetic used during your birth?
2.  Were you deprived of oxygen before or after your birth?
3.  Were you given oxygen after your birth?
4.  Were you ever taken outdoors as a young child to see an eclipse by an adult holding one of those strange cardboard box contraptions?  If yes, did you look up towards the sun and then get rushed into the house?
5.  Did you ever hit your forehead so hard that you were not knocked unconscious but literally saw stars?  If yes, what color were they?
6.  Did you ever experience an extremely high fever that required hospitalization for several days before antibiotics were available?
7.  Did anyone in your family smoke cigarettes?
8.  Did your mother smoke cigarettes?
9.  Did your diet ever change dramatically such as in your teens or college years so you started living on caffeine, pizza, and foods high in salt or sugar?

I am sure that many questions could be added to this list; however, the most important research question that a doctor should ask is, "Is there anything You can tell me that might have caused your condition?"  Since my answer too many of the questions listed above would be, “Yes,” I know that a person who has been diagnosed with a potentially blinding disease is spending more hours trying to answer the question, “Why?” than any medical researcher ever will.  There is no telling how many medical breakthroughs would occur if doctors started listening to patients and working with them rather than just on them.

I recently joined an online social group that serves members of my high school graduation class that will be celebrating a 50th reunion in 2015.  These are the friends who knew me before my glaucoma was diagnosed.  One classmate asked, “How has your poor vision affected your life?”  I gave her a few quick answers, but later I realized that my partial sight loss did not change me.  It changed how the world perceives me.  What did change me were my discussions with my eye surgeon, Paul r. Lichter, M.D. at The University of Michigan Medical Center.  Since my first appointment almost 40 years ago, Dr. Lichter has been teaching me that I am more than a defective pair of eyes.  I have a brain, and he has always expected me to use it.  He taught me to consider my options and to be objective.  He is a master communicator who broke through the wall of distrust that I felt after numerous eye doctors had neglected to diagnose my glaucoma.

Dr. Lichter served as the Chair of the Department of Ophthalmology and was the Founder and Director of the w.K. Kellogg Eye Center.  A research foundation now bears his name.  It is Dr. Lichter who made me an active participant in my health care.  We have a common interest, the quality of life of people with potentially blinding eye diseases.  These diseases are our common enemy that we fight on different fronts.  Under his guidance, I have changed from a hopeless romantic to a hopeful realist.  If the moon does hit a my eye like a big a pizza pie; however, I will let him know.