Daddies Don't Know Everything

This probably comes as no shock to some of you, but I have not always been so modest. When my oldest son, Jeremy, was six or seven years old, I was taking him to a Saturday afternoon movie that he really, really wanted to see. After all this time I cannot recall what the movie was but it was probably "The Muppet Movie" or "Robin Hood".  We left for the theater in plenty of time, but Jeremy was worried that we would be late and miss the first part. He kept asking for reassurance that we would be on time and I kept repeating, "Yes, we will be in plenty of time." Finally he gave a contented sigh and said, "Daddies know everything, don't they?" "Yes!" I replied. "And I am never going to let you forget that you said that." 

Over the years, particularly in Jeremy's teenage years, I repeatedly reminded him of the "truth" that he had accepted so long ago that "Daddies know everything". Unfortunately he learned all too soon, or at least came to believe, that daddies DON'T know everything. The phrase came to be a joke between us which one or the other of us would quote, depending on the circumstances. Some of the teenage years were hard ones for Jeremy and me. Over the years, Jeremy would often call me for advice. And I would often yell at him when he forgot to ask or didn't accept my advice. But we got through those years with our love and respect for each other intact.

My disease has been very upsetting for Jeremy because he likes certainty, and, like all of us, he doesn't want to accept possible bad outcomes.  In talking with Jeremy about my condition, its progress and prognosis, I have tried to reassure him by telling him that he is going to be all right, even without my badgering him about what he should or should not be doing. In fact, I KNOW that, just as sure as I knew we were going to get to the movie on time. Jeremy is well equipped with a superbright mind, a loving heart, a willingness to work harder than anyone else, and a supportive wife. 

I have told Jeremy, and I firmly believe this:  Much of success in life is simply showing up on time and working hard. He will be all right. I have repeated that phrase to Jeremy many times and he has finally come to the place where he can say with a smile, "I know you're right, because daddies know everything."

January 1,2016

January 1, 2016

Here it is, the first day of 2016. There was a time, not too long ago, when I thought I would never see this day. But here I am. Dictating a blog post to Rosalee.

What do I have to look forward to on the first day of 2016? My brother Dannie and my sister-in-law Barb are bringing over some of their traditional pork and sauerkraut for New Year's Day. One thing I can still do competently and enthusiastically is eat; contrary to experiences of many people in chemotherapy, I have maintained a healthy appetite and enjoy, no, love eating. And even better, I haven't gained weight as a result of all that eating; in fact I've lost over 20 pounds in the last six months. Besides eating, I am still pretty good at sleeping. I have no trouble falling asleep, sleeping eight or more hours, and feeling refreshed. That pretty much covers my basic animal needs, except for voiding, which is going better thanks to Sennecott.

All of this brings me joy, but it pales in comparison to looking forward to the arrival tomorrow of Obed, Wally, Chris and Emily. I am apprehensive about being  able to get down on the floor when the grandkids  arrive, rolling around on the floor and laughing and tickling - and getting back on my feet. But at this stage of my life I will take what I can get. And I think what I can get are hugs and childish voices saying, "Grandma, Grandpa!"

2016 will not end when the kids go back to New Jersey.  I plan to work on finding joy where I can, even without them.  Part of the joy has been and will continue to be re-establishing deeper and better communication with Rosalee , my children, my siblings, and my friends. some of them, maybe not as many as I would like to think, get tired of my saying I don't deserve all of this love and support. I am trying to realize that deserving has nothing to do with anything good or bad. I did nothing to deserve deadly brain cancer; I did nothing to deserve all the wonders of my life. And I'm glad I'm not going to be punished for not being more perfect.

I started this final journey promising to be truthful and not to look at any situation either with rose-colored or dark-colored glasses. I see no reason to change that approach now.  It is too early to tell whether any of the treatments - radiation, chemotherapy, electrical - are improving my situation. Whatever it is, whether I'm around to write a blog a year from now, I want to say, "I am not afraid." Our job as humans is to take life as it comes and not complain or view it in terms of punishment or reward, but just live each moment as it comes.

Happy New Year.

New Scenery On The Trip

This is still me, with a new look and a new outlook.  I apologize to all the friends and relatives whose calls, cards, letters and emails have gone unanswered the last few weeks.And for the dearth in blog posts.  I'm not demised yet, and have no immediate plans to be so.Really, there's lots of encouraging news. Rosalee likes the shaved head.  She said it's like there's a new man in the house.  Somehow, that should probably worry meSometimes when I catch a glimpse of myself in the mirror, I think it's one of my shaved-head brothers,Mark, Milton and Harold.  I've been working on my sisters, Jo Ann and Louise to shave their heads  in solidarity with their bald brothers.so far, they have resisted all the brothers' entreaties, despite our generous suggestion that they could keep their Amish/Mennonite bona fides by tatooing delicate little white prayer caps on he backs of their glistening heads.

The reason for the shaved head isn't that the radiation and chemotherapy  have done a number on my hair follicles after six weeks of bombardment.   It's because I started a brand new therapy last week called "alternating electric field therapy," (TTF,) which was just approved by the FDA for new tumors on October 5. Here's a Wikipedia article about it.  To learn more read here.It involves shaving  my head and putting electrodes on my scalp and running electricity through my brain at least 18 out of every 24 hours.  It comes with a battery pack which I carry with me when I'm going to be away from an electrical outlet.

This sounds kind of voodoo, but it apparently works.The clinical trials were stopped because the treatment was found to be effective.  I doubt that this is a cure for cancer, but it does extend the life expectancy. Give me another five years and maybe there will be something else.

Now here's some investment advice:  Remember all the tales about how an investment in one share of Coca Cola or Microsoft or Apple when they were first getting started, would have turned into millions when they got established?  Here's your chance. This treatment has only been approved for brain tunors, but it is being tested for other types of cancer.It costs $19,000 a month.  Can you imagine how much money Novocre is going to be making when the treatment is approved for more common types of cancer like lung and breast cancer?  Don't bet the farm; yhe owners of the company could be crooks or terrible business people.  But if you've ever been tempted to buy a lottery ticket, this is probably a better bet.

How Am I Doing?

How am I doing is what most people are asking me these days.  It's hard to answer the question, because the truth is, I don't know. On the most basic level, I'm doing great.  I have no pain, I'm sleeping and eating well.The weather here in southern "Wisconsin" has been fantastic, with sunny skies, low humidity, temperatures in the low 80s,so there is nothing to complain about, weather-wise. The accommodations here at the guest house owned by the American Cancer Society are great.  We have a large corner room with windows on two sides, kitchen facilities where we can cook our own meals. easy walking to the buildings where I see my doctors and get radiated.  There is nothing to complain about accommodations-wise.

The treatments are very easy. For radiation, my head is strapped into a plastic-mesh hockey-goalie type thing and I have to lie immobile for 10 minutes or so while an x-ray-looking type of machine whirs and burbs and buzzes around my head. I feel nothing different or unusual while this machine is going through its paces. I am more than half way through the radiation and chemotherapy with just two more weeks to go after this week.

For chemo therapy, I take a small pill to prevent nausea two hours before the radiation is scheduled and two small tablets of temozolomide one hour before radiation.I have suffered no ill effects and I have nothing to complain about treatment-wise. I met a man recently whose glioblastoma has been in remission following radiation and chemotherapy for nine years.  So, I always have the hope of being above average in my survival time.

Family and friends have been very supportive.  We have gotten lots of visits, telephone calls, cards and emails. Rosalee has been wonderful in organizing little outings to get me some exercise and to keep from getting bored.

So, why am I writing this post? Well, because on some level, I am feeling uneasy; I don't feel like I'm doing so great.  It's the vision thing for one.  I'm not blind by any means, just like the doctors promised. I can see and recognize people,provided they are not standing on my left side.  I have blank spots in my vision on the left side.  Sometimes I have double vision and see two things beside the blank spots.  It would be nice if the blanks and the double vision could be averaged together so I would have one complete vision, but my brain hasn't learned that basic math lesson yet.  I can see and enjoy trees, flowers, the sky and grass, beautiful girls and women. I really have nothing to complain about, other than I have nothing keeping me from seeing and hearing ugly loudly-burping men in the dining hall. So why do I want to start harumphing when I can't find the frigging mailbox?  It's not that I don't know how to find it.  The mailboxes are on the wall beside the reception desk.  I can make it down the hall, down the elevator, to the reception desk and over to the mailboxes all right. I know that I have to start at the wall and count three boxes to the right.  But I try that and Rosalee warns me that I'm about to steal someone else's mail because I didn't start counting at the wall.  I thought I was, but as it turned out, I wasn't seeing three boxes between the wall and where I started counting.

I've accepted the fact that I'm never going to be driving again -- well, maybe in a demolition derby.  I would actually like to try that.  Accepting that I may never be able to read a book again is harder. I've been reading a little on a Kindle where I can adjust the size of the text, the length of the lines and the spacing, but I quickly tire.  It's taken me three weeks to write this blog post and I'm afraid you will find little humor in it.  Enough complaining.  Rosalee made me get a new computer yesterday that has a capacitive screen, so I can use my fingers to navigate and to make the text larger or smaller, just like an iPhone.  That seems to make the computer work a lot easier. I may try reading on my computer. As I've said from the beginning of this adventure, I'm not afraid of death, I'm at peace with knowing that my demise will probably happen sooner than I had hoped.  It's the living with my losses that is pissing me off.

I'm Not Dead Yet

So there I was drowsily sitting on a bench in downtown Lanesboro next to the Root River in southern Wisconsin when I heard a noise in front of me and thought I must have died and gone to heaven. "But, wait," I thought as I slowly came to my senses, "I thought there were supposed to be seven.  What's the extra one for?"  Then I realized I'm not even Muslim and it was probably too late to make a death-bed conversion at that point.  Upon further reflection, I knew I could never be a martyr, even with my reward just three feet away.  And, finally, as I recovered from my vision, I said to myself, "I'm 68 years old, just who do I think I'm kidding?

After I calmed down, I noticed the girls were trying to take a picture of each other, and could really use a volunteer to push the button of their i-phone.  I decided all was not lost despite my non-Muslim and unwillingness to become a martyr status.

So, I quickly volunteered, forgetting in the excitement that I have lost about half my vision, particularly to the left of my nose.  Try as I could to point the camera towards the middle of the bevy, I kept cutting the last three ladies on the left out of the frame. The young women were good-natured about my difficulties and kept giggling and trying to help me get the camera positioned in the right direction.

Rosalee was in the antique shop across the street and when she came out all she saw were a group of  giggling young women in bikinis clustered around me.  She quickly perceived that someone needed her help; if not me, then some seriously under-dressed young ladies.  She took the photo I had so gallantly struggled with, then prevailed on the women to pose with me for a picture I could send to make my three bachelor brothers jealous of my chick magnetism.

A Wonderful Vacation in Wisconsin

So here we are, in a beautiful small city in southern Wisconsin, known for its world-class health facility, staying at a guest home run by a small religious sect partly named after an obscure 15th-century Dutch priest whose first name rhymes with memo.  His writings were called "Memoranda." (For the literal-minded, this part is not true. )I hate to be so cryptic, but I'm trying to avoid Mr. Google's miraculous powers of detection in case I want to be catty or unkind in some of my descriptions.  I know it would be far far preferable to avoid saying anything that might embarrass me, but it wouldn't be nearly as much fun. 

The cost of staying here is all of $40 a night for a small room, some with private baths,but including a "continental" breakfast. I don't know what continent invented these breakfasts, but they have included freshly-baked cinnamon rolls , baked oatmeal and home made granola.  The downside is that this is run as a religious mission, although as is typical for the followers of this obscure Dutch priest, the mission part is very low key.  There are  a dozen religious plaques around, and there is a prohibition against television, radio and alcohol.  Members of this sect can have computers only for business use, but there is a well-functioning Wi-Fi and no attempt to monitor guests' uses of their computers and smart phones. There is a sign stating the dress code, which includes no shorts, no tank tops, and no "scanty clothes."I am going to leave my spandex in my suitcase. English people with only a popular media knowledge of the Amish, might assume that these people are Amish but any aficionado of Amish culture would recognize that they are not Amish.  The women's head coverings are different, their dresses are handmade but colorful and well-fitted, the men's beards are different, they drive  cars and have modern conveniences.But, like Amish, they have their own elementary schools,eschew higher education and keep a tidy and spotless house.  
Our hosts, Bill and Sherry, are cattle ranchers from Montana.  To quote the Bible, they are the "salt of the earth."  They are unfailingly helpful, polite and gracious to a sometimes weird line of people who come through their doors. Bill nods and chuckles and refrains from offering advice to the desperately ill and hypochondriacs who come to their door for a cheap place to stay while waiting for or receiving treatment at the world-famous health care facility in their city.  They smile and listen and refrain from expressing incredulity at the stories told by some of their guests who seem to be competing with each other for most heart-wrenching story of sickness and disease.

One guest with whom I am closely acquainted tried to short cut another guest's gruesome story of failed surgeries, scar tissue and infections with the helpful suggestion that "You probably don't want to tell us all the details."  Undeterred, the suffering chronicler kept going. Finally, the listening guest with whom I am well acquainted interrupted again to state a little more forcefully, "Maybe, we don't want to hear all the details."  That still didn't deter the talker. The guest with whom I am well acquainted and who isn't known for tolerating fools gracefully was about to say something more drastic, when he realized that he would embarrass his gracious hosts, so he kept his lips zipped.  A rare instance of learning by example.

Crimes and Misdemeanors

The English (meaning everyone who is not Amish, including Irish, French, Italians and Poles) think the cute little Amish boys in their straw hats, dark clothes and bare feet are as holy as they look.  Don't judge a boy by his cover.

My brothers and I were not particularly unusual in our juvenile hell-raising.  In fact, we were much tamer and more well behaved than the run-of-the-mill Amish boys in our community.My first and most serious crime spree was theft.  At around ages 7, 8 or 9, when we looked our cherubic best, several of my brothers and my cousins and I would steal our fathers' cigarettes and smoke them, sometimes a whole pack at a time.  Like Bill Clinton, we did not inhale; we just puffed, so we did not get sick from the nicotine.

Although smoking was technically against the rules in our Amish church district, my father and several of my uncles were on their way out the door from the Amish church and did not find the rule against smoking to be one they cared to obey.  My father was in his late twenties to early thirties at the time.  Several of his best friends were English farmers who came over on rainy days and congregated in his shop, telling stories, smoking cigarettes and drinking beer.  He never smoked in the house, but he never tried to hide his addiction from my mother, or, really, anyone else who wanted to know.

I don't know how we discovered where my father kept his cigarettes.  I just kind of always knew where they were.  My cousins, Floyd and Freeman, had to do a little detective work to find their father's stash.  They noticed that he always went out to his shop  (shop in the Amish vernacular is not a place to sell things, but a place to repair and build things, like machinery and furniture) and they looked until they found his cigarettes hidden in the ceiling.

When we didn't have cigarettes to smoke, we lit up and tried to smoke almost everything else flammable.  We would wrap corn silks in paper towels and although they almost had the shape and appearance of a cigarette, you could only get one or two puffs before they went up in flames.  Most of these activities took place behind the barn.  I have no idea how we managed to avoid setting the barn on fire.

One of the most dreadful moments of my life occurred early on a cold winter day when my brother, Wilmer, and I were helping my Dad milk the cows.  We had Surge automatic milkers which hung from the cows' mid-section and had four teat-shaped cups which squeezed the milk out of the teats.  We would first wash the teats with warm water, then hang the milkers from the strap around the cow's mid-section, then plug the milker's vacuum hose into the vacuum line and attach the teat cups.  The milkers, usually two or three going at a time, made a soft ch-ch- sound as they worked.  No matter how cold outside, the dairy barn was always cozy warm from the body heat of the animals.

On this particularly winter morning, our cozy little routine was interrupted after Dad got the last milker going and then said, "Boys, I heard something today which makes me very sad."  I got a sinking feeling in my stomach as I realized there were quite a few transgressions that he could be talking about.  I just hoped it was nothing too damning.

My father went on to say that he had heard that Wilmer and I were smoking.  He didn't say anything about the stealing.  I'm not sure if he knew about that sin or not.  We were always careful to only take a few cigarettes at a time.  If we took a whole pack, which we did at times, we took it from the back of the carton, so its absence wouldn't be so glaring.

Dad acknowledged that he smoked, but told us that smoking is not harmful for adults, but for children it was extremely harmful.  My brother and I knew that a very severe spanking was coming.  My parents believed in the axiom that "spare the rod and spoil the child," and did their best to keep us from being spoiled.  My parents, unlike some Amish parents, however, did not beat us.  Spanking by Mom usually consisted of using a small switch.  Part of the punishment from her was that we had to go out to the tree and cut our own switch.  This involved careful consideration and some intuition regarding Mom's mood.  The trick was to get the smallest switch that would serve her need to teach us a lesson without getting one so small that  she sent us out again to get a bigger one, or worse, got a bigger one herself. My father sometimes used switches, sometimes used a paddle, sometimes used his hand, but he never beat us the way we heard some fathers did.

After fully expecting that the not-sparing-the-rod exercise would start as soon as we finished milking, Wilmer and I were surprised to hear our Dad saying, "I'm not going to spank you this time, but if I ever hear of anything like this happening again, you are really going to get a beating."

His approach was excellent strategy.  I was so impressed with the lesson and the fear of what would happen if Dad found out that I had done it again, that I never smoked a cigarette after that.  I did smoke a pipe for a few years after college when I thought  a pipe would make me look more intellectual. I smoked a "victory cigar" a few times when I won a particularly satisfying court battle.  But after a few years I decided that was arrogant and stupid, and that gloating invited bad luck.  So I stopped smoking more than 25 years ago and have never been tempted since.

In comparing notes with my cousins in more recent times, I have discovered that our parents used  tried and true police interrogation tricks to try tofind out more about who was responsible for our crimes.  My cousin Milt's mom told him that my parents told her that Milt had supplied the cigarettes.  That was not true and I'm sure I never ratted Milt out.  He still looks at me suspiciously, however, when I tell him his mother lied to him.  I also just found out that my cousins, Floyd and Freeman, were told by their father that Wilmer and I were getting a beating, but that he, Uncle Henry, was going to give them a pass this time but they better never do it again. Uncle Henry made, or tried to make, Floyd and Freeman give all the cigarettes to him.  That was particularly disappointing to Floyd because he had just gotten a fresh supply from Wilmer and me.  So, he gave part of his stash to his Dad and hid the rest for later use.  All of us cousins have always wondered who turned us in.  I always thought it was our cousin Jonas, who wasn't really involved in the stealing and smoking.He was highly regarded by the adults as a fine, upstanding young man whom we younger cousins should emulate.  But yesterday I asked Jonas  if he had tattled  and he denied it. Well, sort of.  He didn't actually say, "I didn't do it."  Instead he laughed and said "How would I have known about it?"  So, he's still a suspect in my mind, but if he did do it, I'm sure he was well motivated and it was probably for my own good.

Thanks Missy Larson!!!

If you've been here before, you will notice that the blog looks so much better than before.  That's because my friend, Missy Larson, who is a professional photographer and designer generously agreed to spruce it up.  She had previously designed my retirement letterhead, which unfortunately I didn't get a chance to use very much.  If you're thinking about starting a blog, or would like some excellent photography or graphic design work done, send me an email and I'll give you her contact information.

On Family

Rear, from left, Me, Mark, Wilmer, Dannie.  Front row, Milton, Jo Ann, Harold, Louise

Passing the peace -- and the mantle as Titular Head of the Family

I'm the oldest of nine children, seven boys and two girls.  One of my brothers, Gene, was killed in a construction accident in 1971.  During most of my growing up years, I did not like being in a large family.  I remember the sinking feeling I would have when I noticed that Mom was pregnant again.  She would have various answers when I complained to her about it.  One was that she didn't know which one of us she would want to give up.  Another was that having babies kept her young (which, though counter-intuitive, I believe was true.)

The disadvantages of being in a large family were obvious, at least to a self-centered adolescent.  We were a loud, contentious bunch, with verbal slug fests sometimes descending to physical violence.  My brother, Dannie, says that he was sometimes afraid that Wilmer and I were going to kill each other.  I certainly tried.  Once I threw a three-legged milk stool at his head, hitting him in the temple.  Another time, we were cleaning manure out of a cow stall and I became enraged because Wilmer was not doing his share.  I jabbed a manure-covered pitch fork into his calf.  During the time I was at home, we never lived in a house with more than three bedrooms -- one for the boys, one for the girls and one for our parents,  along with the baby or toddler, or both. We slept two to a bed and there were the common disputes about farts, hogging the covers, who hit whom first.  Mom would call upstairs:  "Boys, do you realize how that sounds down here?"    No, Mom, I hadn't really thought about how it sounds.  I was too busy trying to teach Wilmer a lesson.

The physical fights between Wilmer and me stopped about half way through high school when Wilmer had a growth spurt and all of a sudden was bigger than me.  I then switched to a form of Alternative Dispute Resolution, which involved a lot of verbal intensity but little physical violence. 

One summer evening after a particularly contentious day, my parents called me into the living room
for a serious talk.  Why didn't Wilmer and I get along?  I tried to convince them that it was all Wilmer's fault.  He was just deliberately obstreperous and provocative.  They weren't buying that explanation.  They kept drilling.  Finally, it came to me.  "I guess," I said, "It's because we're jealous of each other.  I'm the oldest  and I should get to do things that he doesn't.  But he wants to do everything that I do."  That seemed to satisfy them and after our talk, I had a washed-clean feeling, a feeling unlike any I have ever had since, even when I supposedly accepted "the Lord Jesus Christ as my personal Savior."

It wasn't long before the clean heart was sullied again with our petty disputes, but I've never forgotten the insight.   I had been the center of my parents' attention; the only child for just 16 months.  Then Wilmer, the interloper, came along and usurped my position at my mother's breast and in our parents' bedroom.  I thought there should be some compensation for that huge loss.  Part of the compensation should be that I would get recognition as first-born.  I had more responsibilities -- I always had to yield in a dispute over toys because I was the oldest and I should know better.  I should be an example to the younger children.

Since those tumultuous adolescent years, I have come to appreciate the compensations of being in a large family.  Like my mother, I don't know which one I would want to give up, not even Wilmer.  When my brother, Gene, was killed, we all came together to support each other.  When my Dad died of cancer in 1976, we were there for each other.  The same thing happened when my mother died and when Wilmer's wife, Doris, died, also of cancer.  We developed an us-against-the-world mentality.  Although we still squabbled at times, the venom was gone because we had a common grief.

We developed a tradition of going to all of the nieces and nephews graduations and weddings and getting together twice a year, once in the summer and once around the Christmas/New Year's holidays.  It has become harder to do with in-laws and significant others having their own families with demands on their time and grandchildren making logistics difficult.

My cancer was diagnosed just about a month ago.  Already, my siblings have gathered from the four corners of the earth -- Wilmer from eastern Europe, Jo Ann from Kentucky, Louise from Virginia, Harold from Vienna, and Mark from Wisconsin-- to do what?  Mostly to laugh and poke fun at each other.  I organized a Who Loves John The Most contest by which I would award points to siblings who did nice things for me, with the prize being getting to succeed me as Titular Head of the Family upon my demise.  Unfortunately, we lost track of the standings as I was awarding and taking away points arbitrarily, so I finally just decided the title will go to Wilmer as the Second Born and Natural Heir.  Maybe now we'll stop fighting.

Mr. James Brown Speaks For Me

It's been a few days since I have shared my deepest thoughts.  People ask me how I'm doing.  Here's the song that keeps going through my head when I get up and numerous times during the day. I Feel Good, Like I Knew I Would

I Am Afraid Of One Thing

In an earlier post, I told about my surprise several years ago to realize that I am not afraid of dying. However, I am not completely without dread about one aspect of the process.  That is the loss of cognition.  The tumor up to now has been located in the area of the brain that processes vision.  My vision has been affected, but really nothing else.  The tumor is very aggressive and will not stay confined to the vision area for long.  Even now, there are probably some stray cancer cells trying to get established in other parts of the brain.

The doctors have told me that eventually my cognition will be affected.  The good news, they said, is that it will be near the end and I won't know it. That it is likely to come near the end is a comfort but that I won't know it when it happens is no comfort to me.  I do not want to take up scarce medical resources for no good purpose.  Nor do I want my family and friends to suffer by seeing me sitting, tied to a chair, waiting for an underpaid nurse aide to come change my diaper.

In any rational society, I would be able to choose to end my life before things got to that point.  The idea that it is against God to take voluntary steps to end life when there is no reasonable hope of getting better, unable to communicate meaningfully with anyone is a cruel idea.

I realize very well the practical difficulties in making voluntary deaths easy.  An excellent article in a recent New Yorker, I think it was towards the end of June, reports on the effect of a law in Belgium that makes euthanasia legal upon the certification of three doctors of the necessity for it.  Some say the law has made it too easy for persons who are "merely" depressed to decide to die when treatment could make them better.

I don't have any firm opinions on the matter other than to observe that it's very complicated -- much more complicated than the partisans of either side are willing to concede.

In my own case, I want to squeeze as much juice out of life as possible.  I want to live as long as reasonably possible, consistent with quality of life.  Ideally, I would live right up to the point of losing my mind.  I don't know if it is possible to know just when that point has arrived -- I would say it's probably impossible.  Theoretically, the decision could be put into someone else's hands, but whose?  I wouldn't want to put any family member in the position of having to decide that now is the time.  The guilt and recriminations could cause their own life to become miserable.

I want to be clear that I am not talking about "Do Not Resuscitate" orders.  I do not see the moral ambiguity with instructing medical personnel not to take extraordinary efforts to keep a person alive, when all hope for recovery and a meaningful life is gone.  The problem I see is with taking positive steps to end suffering by ending life.

I am not afraid of death.  I am afraid of dementia.  The problem with letting nature take its course is that it will not cause me to suffer; it will make my loved ones suffer.  The alternative is not one I'm ready to embrace at this point.  Nor am I willing to rule it out.

A Sobering Thought

I love my grandchildren and can't get enough of them (I love my children and siblings too, but I can get enough of them once in a while.)  If I had a bucket list, every item on the list would be doing something with my grandchildren.

One motivation, certainly not the only one, is so they will remember me, hopefully fondly.  I know that children under three rarely remember anything from their infancy, and as they grow older, they remember more.  As a practical matter, if I live the average length after diagnosis, Wally, now 17 months old, may have vague memories of me.  Obed, now 4, will remember a little bit. 

Obed is very smart and very perceptive for a four-year-old.  I don't know, for sure, what's going on in his head, but it's clear that he's concerned about what's happening to me and trying to understand.  He has asked me several times and his parents more often, "How do you get brain surgery?"  I've tried to reassure him that it's not something you catch and his parents have tried giving him more scientific explanations about cell mutations, but he's worried.

So, isn't it selfish and indulgent for me to try to spend all the quality time I can with my grandchildren?  They live 14 hours from here and normally I see them only several times a year for several days at a time.  If I truly love my grandchildren and want their welfare, wouldn't it be better for me to be this distant figure that they didn't know very well, and forget about very quickly?

Maybe I need to study Ayn Rand and learn the virtues of selfishness.  (Are you reading, Diane?  I would love to have a serious conversation with you.)  Being selfish goes against the whole fabric of the Christian culture I grew up with.  Maybe Ayn Rand was such a nasty person in life because she had the deep insight that if you truly love someone you will do whatever is necessary for their welfare, even if it involves making them hate you.

It's a quandary for which I doubt that I will have an answer soon.  Right now, I think I'll keep indulging myself with my love for my grandchildren.  I certainly don't want people leaving my memorial service telling each other, as several did following the funeral of a certain Mennonite preacher, "Well, we wouldn't wish him back."

Proof That I Used To Be Cute

In the first picture, the line up is Jo Ann, me, Gene and Wilmer; in the second, its JoAnn; in the third its Wilmer, Jo Ann and me.

These pictures were taken around the time when I had the job of going to the milk house in the dark to turn off the diesel power plant, as described below.  These are pictures taken by my "worldly" aunt, Emma, who ran off to New York City and eventually became a registered nurse.  Her highest formal education before she took off for NYC was eighth grade.  We children admired her immensely.  I remember her as wearing very tight skirts, high heels and with smoldering good looks that could have passed as Puerto Rican.  We children admired her greatly, and probably that admiration led to our eventual apostasy.These are the only childhood pictures of me of which I am aware.  By this time, my parents were probably not "good" Amish in terms of belief, but still very Amish in terms of dress.

Green Bananas!

For most of our married life, I bought the groceries.  I loved it.  It seemed like a modern manly version of "bringing home the bacon."  Of course, I can't drive anymore, and in the store I would probably have thought that I was grabbing one item, only to windup with the one next to it, so the grocery-shopping duties followed the keys to Rosalee.  The other day, I noticed that Rosalee had bought some green bananas.  I was so pleased.

Why Am I Not Afraid?

When I was a little boy, probably 5, 6, 7 or maybe 8 years old, my chore every night was to go out to the barn to turn off the diesel power plant that cooled the milk that had been gathered that day from my Dad's herd of Jersey cows.  We were Amish, so we had no electricity, no yard lights or other illumination in the yard between the house and barn, a distance of several hundred feet.  We lived in the country, so there were no street lights, no cars, no sirens.  In other words, it was dark, pitch black to a little boy whose only way of seeing was  any light from the moon and stars, if there was no cloud cover.The low rumbling of the diesel engine was the only sound.


I did not like the job of going out to the barn to turn off the diesel engine.  But there really was no option of not doing it.  Part of the Amish culture is that everyone works, even the very young.  It would be disgraceful to have your children grow up "spoiled" because they were not taught to work. 
Just before bed time, I would be reminded that it was time to go turn off the diesel.  Very reluctantly and slowly, I would make my way out to the milk house, carrying a small flashlight.  When I got there, I reached into the engine room, flicked off the fuel switch and then turned and ran as fast as I could for the house.  The faster I ran, the more afraid I became, convinced that there was someone or something right on my heels that was going to harm me.  By the time I got to the house, breathless, but not hysterical, because Amish kids are not allowed to become hysterical, I was in a full blown panic.

I have often in my life, particularly in my younger years, been afraid of death. I was surprised several years ago, when I had a tumor in the high sinus area of my forehead to realize that I was not scared.  Receiving the news several weeks ago that I have a brain tumor of the kind that killed my mother and kills 90 percent of the people who have it, did not and still does not scare me. I don't think I'm an unusually strong person.  I have often said I would not have been a successful martyr.  Many of my spiritual ancestors, Mennonites in Switzerland and Germany in the 16th century, were killed by being burned at the stake, boiled in hot oil and tied into gunny sacks and drowned.

Unlike my forbears, if I had been seized by the magistrate and told I was going to die unless I recanted my faith, I would have said, "Where do I sign?" before the first torch was lit.  I do not understand dying for an abstract principle.  It makes no sense to me.  If the choice is to either renounce my beliefs or be killed, I would choose to renounce my beliefs.

So, it is not courage that has gotten me to the point where I am not afraid.  As best as I understand myself now, I am not afraid for the same reason that, as a boy,  if  I had stopped running in the dark, turned around and seen, with my own eyes that there was nothing  chasing me, my panic would have left me.  But there is something chasing me, you might argue -- my tumor.  No, it's not.  Not if I don't run.  I will die, but that is something that was going to happen anyway, whether I got cancer or not.  It's nothing new or unique to me.  It is an inevitable part of nature.

I don't know that I have this completely figured out.  But this is what makes sense to me and gives me peace now.