Thanks for Reading!

Thanks for Reading!

I have been writing a blog since 2009.  My original idea was that it would be a creative outlet and help me articulate some of my thoughts and feelings about being a pastor.  I wrote about all sorts of thing.  Topics might have been something serious like how it feels when church folks tell you they are “going to try out the church down the road,” or something as mundane as my filing system or library organization.  I wasn’t really expecting internet notoriety, and, sure enough, I didn’t get it.  

That changed in 2016. I had been diagnosed with Corticobasal Degeneration (CBD) in 2015 and wanted to do something different with my blog. I started writing about my experiences with CBD.  This was to give my friends all the information they might want to hear about my condition.  I also found it therapeutic to just put down in words how I was feeling.  

I have been a pastor all of my adult life.  That has meant that a good deal of time has been spent communicating.  I typically preached three times a week and also taught an adult Sunday School class.  Anyone who knows what pastors do will also think about the amount of one-on-one conversation a faithful pastor has with his flock.  Now, with CBD to contend with, there has been a radical shift.  I had to resign from the church I had served for 21 years because I could no longer fulfill my responsibilities.  It was just too much.  As my symptoms progressed it became unsafe to drive, and so I became dependent on others to go anywhere, assuming I had the energy to do so.  At about the same time that I gave up driving, it seemed like my voice became markedly worse.  The speech pathologist at Mayo Clinic had diagnosed me with “mild to moderate dysarthria” in the Fall of 2015.  I am confident that the word “mild” and possibly even “moderate” would have been dropped by 2017.  I was able to fill the pulpit of a number of churches after my resignation, but as my voice began to fail me, I preached less and less.  I often did not feel equal to the task and feared my voice would fail mid-sermon.  More importantly, I have always felt that preaching is supposed to be about God, not about His messenger.  Ever since I broke my hip in 2017, I have had to sit on a stool to preach.  Combine that with an unpredictable, sometimes hard to understand voice and I felt as though I was drawing too much attention to myself when preaching.  The bottom line for me is that my “communicating,” whether through preaching or personal interaction, has definitely diminished.

All of this has made me turn, with renewed interest, to my blog.  It is a way to speak.  As I noted earlier, I did not begin to blog anticipating there would be much of an audience, but that has begun to change with my entries about my CBD journey. No, I am still not an internet sensation, and never will be, but I do see how many times my page has been viewed, and that number has grown.  I advertise my blog posts on Facebook, and I often get positive feedback.  I am particularly glad when other members of the CBD Facebook group say they are helped by something I have written.

Now, you would think that someone who feels he has a message to share and a means to do it would end up writing some really great blog posts.  I wish I could say that is true of me, but I can’t.  I’m not saying that I don’t feel like all of my blogs have been worth reading, I just can’t predict which ones will grab a reading audience and which ones won’t!  I have written some that I could not read through without crying, and they got 60 or 70 page-views.  Others, which in my humble estimation were not as good, got over 1000 page-views.  It’s a mystery to me.

For 20 years, while I was serving Bethlehem Church, I had a Monday morning radio broadcast called “The Shepherd’s Hour.”  When it was first offered, I was really excited about having a “media ministry.” I knew the station wasn’t exactly a powerhouse, but it did cover the county and large parts of the surrounding counties, so there was a large potential audience.  I anticipated that before too awfully long random strangers would hear me talking somewhere and ask, “Aren’t you that preacher on the radio?”  If you are thinking, “I bet that never happened!” you would be wrong.  In 20 years it happened exactly once!  In spite of reminding friends and neighbors that I was “on the air,” they seemed surprised if the fact got inserted in a later conversation.  In fact, after about three months on the radio I was convinced that no one, other than my mother-in-law, was listening!  Then someone mentioned hearing my Monday morning message and said they appreciated it.  A few others even called the station to express gratitude.  More importantly, there were a few “hard cases” that wouldn’t darken the door of a church on a dare, who told me they were listening!

I guess what I’m saying is that just as I learned there were people listening to my radio program, there are folks reading my blog.  I hope it is doing them good, and just about the time I am convinced no one is reading, I get some appreciative comment or “like.” It seems my “communicating days” are not quite over.  Thanks for reading, I hope it is doing you good.

Memento Mori

Memento Mori

Recently, while reading Walter Isaacson’s biography of Steve Jobs, I came across the Latin expression memento mori.  Isaacson explains that when a Roman general returned victorious from battle he was given a Triumph, a grand parade, where many gifts and honors were bestowed upon him. Throughout all of this, a servant would follow the general repeating, “Memento mori,” which loosely translates into “Remember that you have to die.” This is from the chapter in Isaacson’s book where the cancer diagnosis, which would eventually take Jobs’s life, is first mentioned.

The writer of Hebrews reminds us, “It is appointed unto men once to die, but after this the judgment.”  We all observe the fact that people die, and yet in spite of scripture and experience most of us fail to consider our own mortality, that is until a doctor brings us a life threatening diagnosis.  About two years ago that happened to me.  It put me on an unfamiliar path.  I had been the care-giver throughout my pastoral career; now I was the one being cared for.  Not the one praying, but the one being prayed for.  As is typical for me, I began to look around for books to help me on this journey.  I found some that have been particularly helpful, and I believe would be a resource for both the suffering and those who want to understand and minister comfort. Most of these are not Christian books, but they are honest in picturing the struggle of men and women wrestling with their own mortality.

1.  When Breath Becomes Airby Paul Kalinithi, Random House, 2016

This book was recommended to me by my neurologist and is one of the best written books I have come across.  The author, who was a neurosurgeon in training, tells of being diagnosed with terminal cancer and how he spent the 22 months until his death.  As a doctor he had a clinical view of death, but when it was his life ebbing away his perspective slowly changed.  The readers can find themselves somewhere on that learning curve.

2.  Tuesdays with Morrieby Mitch Albom, Broadway Books, 1997

This book details the story of a college professor who is dying of ALS.  He reconnects with one of his favorite students from years earlier who had gone on to be a successful sports writer.  The two get together each Tuesday for the professor to talk about life, and death.  The reader feels as though he has taken a seat beside the bed of a wise man who wants to impart that wisdom before it is too late.

3.  The Last Lectureby Randy Pausch, Hatchette Books, 2008

Pausch was a computer science professor at Carnegie Mellon University.  He developed cancer, and, while he tried to beat it with a radical procedure, he did not.  He knew from about six months out that his death was imminent.  This led to what the university called his “last lecture.” It is a tradition at many schools for a retiring professor to give such a talk.  Pausch was extended this opportunity and took it.  The result was a memoir of sorts, packed with common sense rules for life.  If there is such a thing as an upbeat book about death, this is it.

4.  The View From A Hearseby Joe Bayly, Clearnote Press, 1969

This book is one of the many recommendations made by Warren Wiersbe from his book, Walking With The Giants.  It is from his chapter on the Minister as Comforter.  I can see why he recommended this book.  Bayly is a Christian minister who has served in both local church and Christian college settings, but his understanding of this subject is not merely theoretical. Beyond ministering to the dying and their families, he has lost three of his own children.  He discusses such subjects as praying for healing and gives some very practical advice about counseling the dying and those who love them.

There are many more books on this subject, some of which I have read, but these are the ones that I feel have the most potential benefit both for the dying and for those who minister to them.  Only Bayly’s book has a clear Christian perspective on death, but the others are what might be called examples of common grace.  They have wisdom and even inspiration to share with us.

An Unexpected Fall

An Unexpected Fall

I don’t really think I could count all the times I have fallen down since my brain was invaded by corticobasal degeneration (CBD).  Of course, all of them were unexpected, but one, as of this writing my last one, was unexpected in a different way.

It was a typical afternoon, and I was working away in my study when I began to cough.  When you have a problem with aspiration, coughing can get intense and this spell was worse than usual.  Finally, things stilled, and I knew a glass of water would be helpful. I stood up, took one or two steps away from my desk and began to cough again!  I did have both hands on my walker, but that wasn’t enough.  I found myself falling backward first hitting my desk and then my chair on the way to the tile floor.  Ever since I broke my hip, I have had a healthy fear of falling. As I lay there on the floor for a moment, I did a quick inventory of myself, looking for the pain of a broken or cracked bone.  Thankfully, nothing registered.  The next order of business was to get up.  Getting up proved to be more of a challenge than you might think.  They tell us that CBD is typically not a “wasting disease,” that is you don’t lose muscle from it.  However, what I have found is that the coordinated use of those muscles has become a problem.  I struggled for half an hour to get up and just couldn’t do it.  At one point I was thinking that if I could just push myself up to my hands and knees, I would be able to grab something and get vertical. I put everything I had into doing the equivalent of one push-up and failed.  As I lay on the floor, I remembered passing an Army commissioning physical where I had to do 25 push ups in two minutes; now I couldn’t do one! Well, what was I to do now?  I had my cell phone in my pocket so I could call for help.  As much as I didn’t want to become the elderly lady in the TV commercial, I needed to call my wife at school and tell her, “I’ve fallen, and I can’t get up!” Joy was coming through the door as quickly as the speed limit would let her, and together we figured out a way to get me up.  I have never been so tired in my life.

Fast forward a little more than a week, and the bruises from my fall were fading.  My two brothers have been good about coming to take me out to lunch every couple of weeks, and on a cold, overcast day we headed out to a restaurant.  Everything went great until we exited to get in my younger brother’s truck.  I had a “to-go” cup of tea and my older brother took it to put in the truck.  I was on the sidewalk and there was a step down to the parking area.  I have made that sort of step many times before without incident, but not this day.  I suppose it was pride that made me not want to wait for one of my brothers to come back and give me a hand.  You can probably guess where this story is going!  I took the one step, the walker flew out in front of me, and I went face first into the asphalt.  In a flash my older brother was pulling me up and then my younger brother was holding me upright.  I can honestly say it is the fastest I have ever gotten to my feet since I began dealing with CBD!  By the time we got home my right eye was beginning to swell.  Initially, I didn’t feel all that bad, but within an hour I knew I had bounced off the pavement.  I texted Joy, and, once again, she came home early.  Upon seeing me she felt like I ought to go to see our doctor. He took a look at things and decided that given the placement of the blow to my head, a CT Scan was called for. We did that as well as an x-ray of my knee, which was really beginning to hurt.  Thankfully no brain bleeds or broken bones.  On the way home Joy said, “I knew that CT Scan wouldn’t find anything.” Imagine that, scanning my head and finding nothing!  Of course, she didn’t mean itthat way, but I repeated her saying for a week!

They say bad things come in threes.  A week or so later I was checking my email and noticed one from the UCSF Aging and Memory Center.  They are doing a clinical trial of a new drug which may slow the progress of CBD.  About six weeks prior, I had put my name in for every clinical trial the government web site listed.  This email wasn’t entirely unexpected, but I had pretty much given up hope of being a lab rat in anyone’s study.  When you are told that there is no treatment for your illness, even a long shot can give you hope.  The message asked if I would be willing to talk on the phone for about 20 minutes to see if I met their criteria, and within an hour I was talking to a pleasant woman named Vivian.  Everything went along fine, and I began to feel better and better about the prospect of getting this drug, that is right up until the end.  “Do you have a pace maker?”  Well, yes I do, but I had asked if an MRI were possible with one and authorities assured me it was.  “Randy, I think that is exclusionary.  Let me check around to make sure and call you back.”  About 20 minutes later Vivian called back.  My pace maker would exclude me from the clinical trial.  I suppose Vivian had dealt with disappointing potential patients before.  She was very empathetic and hoped I wouldn’t be too disappointed.  I said I wasn’t, that I had suspected something would keep me out, and I had tried not to get my hopes up. 

I am not sure how convincing my lie was to Vivian.  For about an hour that afternoon I began to think about possibilities I had only dreamed of.  Things like walking without a walker, being able to drive again, and living without the dread of what I wouldn’t be able to do tomorrow that I could do yesterday.  This was the unexpected fall.  Hope is a funny thing.  It can rapidly lift you up, but if hope is dashed just as suddenly you drop, and you will end up lower than you were before hope came along.  That evening I was hip deep in the “slough of despond.”  I made the mistake of estimating how long it would take a drug to move from a phase 2 clinical trial to being commercially available. There are a lot of variables in that, but the answer to how long was, too long.  I slept fitfully and finally got up about 4 a.m. to read my Bible.  I wish I could say a verse just jumped out at me and gave me an overwhelming sense of peace, but that didn’t happen. Instead I began to think of my situation in comparison to that of others.  Being a pastor all of my adult life has meant I have seen others suffer. I have seen cancer patients whose bodies dwindled away and dementia patients who minds did the same.  I remembered the funerals where I had buried someone younger than myself.  I began to think of all the pictures I had seen on the CBD Facebook page, especially the before-and-after pictures.  Then I slowly came to a conclusion: What right did I have to feel sorry for myself? As someone much smarter than I put it, perspective can be a blessing.  It was to me that morning.  I glanced at my watch and saw it was 6 a.m.  I wasn’t entirely out of the slough of despond, but neither was I as deep as I had been.  I went back to bed and thought of a verse from Proverbs which has come to mean a lot to me.  The context speaks of the value of godly wisdom and then promises, “When you lie down, you will not be afraid; Yes, you will lie down, and your sleep will be sweet.” Mine was.