By's Musings

Disease

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Update on My Health

Friends, it’s been three months since my last post. It’s been a much longer absence than I intended. Three months may actually be the longest dry spell of writing in my entire career, not just my time as a blogger. I can’t ever remember any three month interval in which I did no serious or significant writing. It has been like I am in a boat, stuck in the middle of a lake, and I lost the winds in my sails. However, it is not as if I had run out of ideas on which to write. During those three months, I accumulated a list of more than 200 potential ideas for posts. However, during this period, whenever I sat down at my computer to write, something would happen and I could never finish my thoughts. Sometimes as I started to write, I couldn’t decide on the approach I needed to take to bring out the important aspects of the subject at hand. At other times, I would get into a topic and I found it had a mind of its own. It started going in a direction I didn’t want to go and I had to shut it down.

I finally decided to step up to the plate and follow the advice that, for years, I gave to scores of institutions that were struggling in the beginning stages of assessment programs. I would tell institutions to just pick an area and an approach, and then attack it. I would also suggest that after that first task was finished, the institution should celebrate its victory. The institution should then pick another topic, and go after it.  You make progress one topic at a time.

The first topic on which I have decided to write is an update on my health. I offer this posting, not as an excuse for the recent scarcity of posts, but as a partial explanation of my pain. It is also a request for your prayers and thoughts. The past five years have clearly taught me that God is a God of miracles, and not a God of my convenience. If not for the grace of God, I would not be writing anything. I have had six doctors in six different specialties tell me that there are no scientific or medical reasons to explain why I am still walking and talking, or even breathing.

After a life of excellent health, the past five years have been a long, trying journey. During this period, I have picked up a long list of problems which began with the rescission of a benign meningioma. This list of current conditions includes a mild case of aphasia, epilepsy,  abnormal involuntary movement (tremors), disturbed sensory perception (dysesthesia), organic hallucinosis (sensory hallucinations), fatigue, attention or concentration deficit, and mental status changes. These are complicated by another somewhat smaller list of conditions that I have picked up over the past ten years, independent of the brain tumor. This list includes atrial fibrillation and obstructive sleep apnea. Taken collectively these conditions have complicated my life and forced me to retire from full-time work within the academic world.

This fall as I strove to get my proposed coaching/consulting business, Higher Ed By Baylis LLC, and this blog, By’s Musings, off the ground, I have encountered some additional complications. Since the onset of my epilepsy four years ago, my seizures have been controlled by medication. However, earlier this fall I became concerned as I experienced several incidents of sensory overload, brought about by loud noise, quickly changing lights and my cross sensory perceptions. The confluence of these sensory experiences seemed to take me to the precipice of seizures. I developed intense headaches, became nauseated and momentarily lost track of where I was.

The intensity and frequency of headaches increased throughout the early fall until they reached their peak in mid-October. Thus, for the past eight weeks, I have experienced continuous headaches. The only things that change are intensity and location. I wake up with them in the morning. They wax and wane between “four” and “eight” on the normal ten-point pain scale. The headache moves around my head, fading out in one location, as it fades in at another location. As I wrote this paragraph, I found myself engaged in a metaphysical and grammatical argument: Am I experiencing one headache and I should use singular nouns and verbs; or is it many different headaches and I should use plural forms?

In an attempt to find answers, my neurologist ordered a DAT scan to determine if the tremors were related to the possible onset of Parkinson’s disease, and an MRI to determine if there have been any changes within my head. The DAT scan was negative. The good news from that report is that the tremors are not related to Parkinson’s disease. The bad news is the test doesn’t tell them what is causing the tremors. The results of the MRI were a little less positive. There is still a hole in my head where the tumor had been. There is still scar tissue approximately the size of a dime on my right frontal lobe where the tumor had been attached. Unfortunately, the new MRI showed some swelling in the surrounding area, along with a very small new growth within the hole. My neurosurgeon says that the growth and swelling are not extensive enough to be causing my headaches and other problems. However, any abnormalities in the brain area must be watched. Thus, I will have another MRI in three months. Depending upon the results of that MRI, it could be followed possibly by additional MRI in another three months to monitor the growth and swelling.

I know that God can heal me and I pray that He will do so. However, if God decides to do something else, I pray that I will be able to stand with Shadrach, Meshach, Abednego, and Job and say, ” My God is able to deliver me from these medical problems. If he does, the glory goes to Him. However, if He doesn’t, I will still serve Him. The Lord gives, and the Lord takes away. Blessed be the name of the Lord.” Please pray this prayer with me.

16 Shadrach, Meshach, and Abednego, answered and said to the king, O Nebuchadnezzar, we are not careful to answer thee in this matter. 17 If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king. 18 But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up. (Daniel 3:16-18, KJV)

20 Then Job arose, and rent his mantle, and shaved his head, and fell down upon the ground, and worshipped, 21 And said, Naked came I out of my mother’s womb, and naked shall I return thither: the Lord gave, and the Lord hath taken away; blessed be the name of the Lord. (Job 1:20,21, KJV)

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Spiritual Tenacity

In late July, the Assistant Pastor at our church, Calvary Baptist Church of York, PA, preached a sermon entitled Spiritual Tenacity, based on Acts 14 and Paul’s experiences at Lystra, and Paul’s instructions to his mentee Timothy in II Timothy 3:14,

But continue thou in the things which thou hast learned and hast been assured of, knowing of whom thou hast learned them; (KJV)

Before the Pastor began his sermon, just its title sent my mind racing. What does tenacity mean? What does it look like? Earlier in July, Gettysburg celebrated the 150th anniversary of that great battle. There had been numerous mentions of the tenacity of both sides of the battle as they faced off against each other on Cemetery Ridge during the climatic conclusion of the battle known as Pickett’s Charge. I will speak more of this view of tenacity in a later post.

What dominated my thinking about tenacity during the prelude to the service was the idea of tenacity referring to the ability to persevere, to “hang in there,” or to hold on in the face of tremendous odds or overwhelming opposition. I kept visualizing two pictures that I had taken during a trip to the far U.S. Northwest in the year 2000.

The first was a picture of my wife. It was taken along the Road to Paradise in Mt. Rainier National Park, at the Martha Falls Viewpoint, next to the 100 feet deep Steven’s Canyon cut out by Unicorn Creek, which is fed by melting glaciers on Mt. Rainier. The picture makes it appear as if she is tenaciously hanging on for dear life to keep from falling into the gorge behind her. However, this picture is deceiving because she is actually standing on a 20 foot wide ledge between the rock in the picture and the edge of the cliff.

My wife hanging on for dear life

The second photograph that came to mind was the picture of a hemlock tree which is at least 50-years old judging by its size and shape. The tree is growing out of what appears to be a solid rock near Inspiration Point, at the edge of the “Grand Canyon of Yellowstone” a ruggedly beautiful gorge cut out of rocks by the Yellowstone River.

The hemlock tree probably started out as a little seedling in a small pile of dirt on top of a rock ledge. As it grew bigger and bigger its roots wormed their way into fissures in the weathered rock. As the tree grew older and stronger, the roots tenaciously dug into the rock to grab onto a solid foothold.  The tree now stands firm near the edge of a 1000 foot gorge that sees heavy winter storms, lots of snow and winds. It has tenaciously dug its roots into the rock in order to maintain its stability.

Tenacious tree on the edge of a huge abyss

These are my pictures of tenacity. The perseverance to hold on in the face of insurmountable odds and opposition.

The service began with the singing of the hymn “I am Resolved,“  a classic late 19th century hymn written by Palmer Harsough (words) and James H. FIllmore, Sr. (music) which speaks to the resolve and tenacity required of a follower of Christ.

Verse 4

I am resolved to enter the kingdom
Leaving the paths of sin;
Friends may oppose me, foes may beset me,
Still will I enter in.

Refrain:

I will hasten to Him, hasten so glad and free;
Jesus, greatest, highest, I will come to Thee.
I will hasten, hasten to Him, hasten so glad and free;
Jesus, Jesus, greatest, highest, I will come to Thee.

 Resolve is another great word which has its own visual images for me. I have spoken about resolve in earlier posts, “Aphasia is not the end of the world”  and “Epilepsy is not the end of the world.” However, the sermon and songs brought new visuals to my mind. The first picture of resolute that came to my mind was the picture of a dying Jim Valvano accepting the Arthur Ashe Courage and Humanitarian Award at the 1993 ESPY Awards Ceremony. I invite you to watch this 11 minute video provided by the Jimmy V Foundation for Cancer Research. Click on the link below and open it in a new window. It defines resolute better than I could ever find the words to do so.

   Jim Valvano: Never give up; Don’t ever give up

Returning to the church service, Pastor Hall used several incidents from the life of Christ and Paul to introduce us to spiritual tenacity. Why do we need spiritual tenacity? From where does it come? Since this is such an important message, I will speak to those in another post.

To my friends and all others who might happen by this blog, in the words of Jimmy V, “Never give up; don’t ever give up.”

 

 

 

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Beware the Ides of March

“Beware the Ides of March” is the warning that a soothsayer whispered to Caesar in Act 1 Scene 2 of the Shakespearean play “Julius Caesar.” Because of the noise of the crowd through which Caesar and his entourage were walking, Caesar didn’t understand the words. Ironically, it is Brutus who tells Caesar that the man is warning him about the Ides of March.

The word “Ides” is one of the three named days of the month of the Roman calendar. “Kalends” was the first day of the month. “Nones” was the seventh day of the month; and “Ides” was approximately the 15th or the middle of the month.

With the help of Shakespeare, the phrase “Ideas of March” gained a sense of foreboding in the European world. It carried the same connotation that “Friday the 13th” invokes in today’s world. They are superstitions, irrational and unfounded beliefs in objects or signs having magical power to control peoples’ lives.

For Christians, superstitions are akin to idolatry. It is attributing the providence of God to something else. Nothing is done outside of God’s control or permission. To believe otherwise is really a transgression against the first commandment:

“You shalt have no other gods before me.” (Exodus 20:3 KJV).

This concept is explicated in Isaiah 46:

“9Remember the former things of old: For I am God, and there is none else; I am God, and there is none like me.

10Declaring the end from the beginning, And from ancient times the things that are not yet done, Saying, My counsel shall stand, And I will do all my pleasure:

11Calling a ravenous bird from the east, the man that executeth my counsel from a far country. Yea, I have spoken it, I will also bring it to pass; I have purposed it, I will also do it.” (KJV)

Living by superstitions leaves the door open for Satan to take control of the situation and us, as is described in I Peter 5:8,

“Be sober, be vigilant; because your adversary the devil, walketh about, seeking whom he may devour.” (KJV)

In Act 17:22, Paul on a missionary visit to Athens proclaimed:

“Then Paul stood in the midst of Mars of Mars Hill, and said, Ye men of Athens, I perceive that in all things ye are too superstitious.” (KJV)

For several years, March has been a rough month for me. However, I do not believe that March is a bad month. In March 2007, I had a sinus infection that developed into bronchitis. In March 2009, I had the stroke-like episode with an imploding brain tumor. In March 2010, I had a bout with pneumonia. In March 2011, I had a pacemaker implant.

Several weeks ago, in March 2013, I had what appeared to be a heart-attack, but it turned out to be a gallbladder attack. I had to have my gallbladder removed. Fortunately they were able to take it out via a laperoscope. However, before they were able to get it out, my gallbladder pumped infection throughout my body. I spent more than a week in the hospital. At first they thought the infection might have affected my heart. However, a stress test showed that my heart is as strong and overall as healthy as it has been all along. The stress test technician said that my stress test result was the best that he had seen for many months. My heart is strong. The only problem is that the beat is irregular. I just don’t have rhythm. The infection did cause me some urinary bladder problems. I had to carry a bag for almost two weeks. The catheter is out but my bladder may not be emptying properly. Please pray for God’s continual healing in this matter. Catheters are a pain and bags are extremely inconvenient.

All the health problems of this March have set back my writing agenda. I have ideas piling up. I hope to be able to return to writing soon. However, the hallucinations, cross-sensory perceptions and inability to concentrate continue to plague me at times. My neurology team has tried several new medications. The only change I noticed is that I am having more vivid dreams. I almost have a sense of what Samuel Taylor Coleridge experienced. I can see Xanadu more clearly now.

I had two excellent doctors’ appointments in early April. I am free of the catheter and bag for at least three weeks as long as I’m a good boy and drink lots and LOTS of water. The urologist was amazed that my retention in a follow-up appointment was only half of what it was in the first appointment. She said that was great and very, very unusual. I told her prayer still works.

At the second appointment, the surgeon also said that I am an unusually good healer. My surgery scars are healing as well as he has ever seen. He said that I am truly a “young man” in terms of parts of my body. He said that it shows that I have taken good care of myself over the years. I told him I had some help from above. Both my cardiologist and my surgeon have given me clearance to get back on the stationary bike, so hopefully I will be back in the swing of things by this coming week. My legs are getting restless for work. Please pray with me that my brain will return to clarity so that I can return to writing.

I do not have to worry or be afraid of the Ides of March. I may not understand God’s reasoning, but I can’t question his power or mercy. He has shown his power and mercy over and over again. I have had many opportunities to meet and talk with people that I otherwise would not have contacted. I can do nothing else but praise His name and thank Him for His goodness to me.

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Random Events, Conditions, Disorders, Diseases: Part II

I finished Part I of this post making two claims.  The first claim was that the labels given the circumstances of patients can affect the patients’ perceptions of themselves. The second was that those labels can affect the treatment offered to the patients. In addition to those two claims, I asked two questions. One of the questions was, “Is health care a public or private good?”

To those of you who are saying, “That’s a trick question,” I will admit that it is definitely a trick question. The trick spins on two pivotal points. The first pivotal point is how one understands the word “good.” If one takes it as meaning “benefit,” health care can and should provide a private benefit to individuals. I believe individuals should have the opportunity to enjoy their lives completely. If individuals are healthy, they are enabled to contribute as much as they can to society. The more individuals benefit society, the more society benefits.

I know the second pivotal point making this a trick question will get me in trouble with many readers, because I am going to bring the discipline of economics into the mix. Some of you are already asking, “How can you put a monetary value on a human life?”

Before I sink too deeply into this quicksand, I will tell everyone that I value everyone’s life, just as John Donne wrote in his essay, Meditation XVII,

“No man is an island, entire of itself…never send to know for whom the bell tolls, it tolls for thee.”  If one person dies or is incapacitated, that takes away a little piece of me. Most people are more familiar with Donne’s essay translated into a poem that Ernest Hemingway used in the flyleaf of his novel, “For Whom the Bell Tolls.” In this sense, health care is of social benefit.

Although many political careers have been lost or almost lost trying to traverse this quicksand blog, I’m not a politician and I believe that I must begin wading through the quicksand. Health care, just like everything else in today’s world, has expenses related to it. Expenses and money bring the discipline of economics into the fray. Economics defines a social good as a benefit with two properties.

The first property is known as “non-rivalry.” This refers to a good that all can enjoy in common in the sense that each individual’s consumption of such a good leads to no subtraction from any other individual’s consumption of that good. Health care on the surface may appear to be a non-rivalry good. However, on closer inspection it is not hard to become convinced that there is not an inexhaustible supply of doctors’ time, hospital space or medications.

The second property is known as “non-excludability,” that is, it is impossible to exclude any individuals from consuming the good. For health care, it is easy to see that certain individuals can be excluded.

Since health care fails both the non-rivalry and non–excludability tests, health care can’t be classified as a social good. Does that make it a private good? The major problem with labeling health care a private good is that the overwhelming majority of individuals can’t afford the cost of treatments associated with health care.

In addition, even if all the individuals who need a certain type of health care were to pool their resources, they couldn’t possibly pay for the research and development necessary to further the fight against their condition, disorder or disease. R & D for health care must be considered something beyond the communal efforts of those directly affected. R & D requires a social effort.  In Part III of this post, I will highlight a number of those R & D efforts as well as some communal efforts that attempt to help patients and their caregivers cope with their day-to-day problems.

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Random Events, Conditions, Diseases, Disorders, Part I

Random Events, Conditions, Disorders, and Diseases: What, if any, are the differences between these terms? The term “random event” carries with it the connotation of a single event for which an explanation is difficult, if not impossible. The term “condition” carries the connotation of repeated events, which may occur with regularity or in a predictable pattern. The term “disorder” carries the connotation of a condition which is caused by an identifiable internal malfunction, or design flaw. The term “disease” carries the connotation of a condition which is caused by an externally introduced agent.

  Why am I concerned? Should I be concerned? Should others be concerned? The human side of these questions includes the human psychological need to name, identify and control internal and external events. However, it also includes the practical side to these questions because insurance reimbursement almost always requires the identification of a problem. Insurance companies are usually hesitant to reimburse for the treatment of a “random event.” I have been questioned on coverage until the random event could be identified as part of a condition or disorder.

I began thinking about this post in relationship to my concerns and questions connected to my recent battles with health, communication, physical abilities, and mental capabilities. However, as I have talked and exchanged emails with others, I have found that I was not the only person to ask these same and related questions. The article, “Branding a Soldier with Personality Disorder” in the February 25, 2012 edition of the New York Times, raises the related concern of a hierarchy among disorders. The article may be found at <http://www.nytimes.com/2012/02/25/us/a-military-diagnosis-personality-disorder-is-challenged.html?_r=1&nl=todaysheadlines&emc=tha2 >

This hierarchy among random events, conditions, disorders and diseases affects the coverage and treatment that one can expect to receive. Senior moments receive less attention than aphasia. Senior moments receive less attention than dementia or Alzheimer’s disease. Tremors receive less attention than Parkinson’s disease.

With these states of affairs stacked against an individual, it is imperative that individuals and their caregivers be prepared to insist upon and fight for the best and most appropriate treatment available. Given the current fiscal model under which medicine operates, the best and most appropriate treatment available may not be the first option offered to patients and their caregivers, if any option is offered at all.

Please understand that I am not condemning the medical enterprise for this state of affairs. I have spent 40 years in higher education. It has its own difficulties that many believe begin with a broken fiscal model. This often means that the best and most appropriate education is not always offered to students. At the risk of starting a philosophical war I invite responses to the question: “Are education and medical care, a public or private good?”