Many folks have asked us, since we retired, how in the world we stayed in the local church ministry so long (45+ years).  It all goes back to a decision we made after our second“crash and burn” experience in just over 6 years of full time ministry.  We were young, with a still very sick baby, when the first church we were called to serve pulled the rug out from under us.  One day, Ed had a full time job, and the next, we were homeless!  We had to borrow money to rent a truck to get our stuff 500 miles north to a storage unit near my parents’ home in East Tennessee.  Unbeknownst to us that first traumatic week, we were pregnant with our second child.  In fact, Joel’s name is a testament to God’s grace and mercy during those days. Jo-el means the Lord is God. God is the “I AM”…God is who God says he is!! We figured if God could get us out of that mess, then God surely must be all God claimed to be!

We soon moved on to our second church, believing the old adage that if you are thrown by your horse, you should immediately remount.  “Surely,” we thought, “that first church situation was a fluke, and we will get things right the second time around.”  We asked every question we knew to ask, prayed hard, did much soul searching…and believed God’s hand was on that move.  Perhaps God was in that decision, but it didn’t take long for things to go awry!  In a little more than two years, we again found ourselves without a job.  This time, we had two preschoolers, a mortgage, two cars – you get the picture.

At that point, we made the life-changing decision that became one of the “secrets” to our success: Never, ever, put your eggs in one basket again! For us, that meant never again would we commit to a full-time position in one church! So, even though we had originally felt called to be a ministry team, we gave up that vision, and each individually pursued separate church and music careers. Ed served 7 different churches, one school, and taught private piano lessons and tuned pianos for years. Kay served a total of 3 churches, taught in two public schools, and taught private piano for years. For us, this worked, but I will always wonder what might have been possible if we could have used our complementary strengths in one full time situation.

Dear friends, there is an elephant in this room we call “Church.” We rarely speak or even acknowledge that The Elephant is even there, yet it is wreaking havoc on churches everywhere. It is literally destroying good folks who commit themselves to ministry, even going for advance seminary training, often leaving extended families to serve in distant communities. The elephant, in a nutshell, is the serious lack of skilled confrontation and the misunderstanding of anger among both pastors and their parishioners. It would do us well to remember the biblical admonition, “Be angry and sin not!” Sadly, this is one area that is never addressed during professional ministerial training!

I am still haunted by a statement made by one of our seminary professors: “If someone in any of your churches decides they don’t like you, they can and will find a way to get rid of you.” Some folks, it seems, have huge invisible “toes” that unwitting ministers step on without even realizing they are there! Some church folks want to “help” the ministers by offering supposed positive criticism…and gradually undermining not only the morale but also the ministry of those called into the Ministry. Some folks are power people, used to calling the shots in many of their regular groups. When a new minister doesn’t bend to such power mongering, because he/she senses God’s leading in a different direction, lines are often drawn and the battle begins!

Saddest of all, to me, is the fact that much of this dissension happens behind closed doors, and the vast majority of church members have absolutely no clue that there is something amiss. The identities of the perpetrators is protected, in the name of Christian Professionalism, and they are often allowed to take on the role of bullies who run amok because no one confronts them. When the inevitable explosion occurs, there are a myriad of hurt feelings with folks left angry, disillusioned, disgusted, frustrated, incredulous that such a thing could be happening at their church!

I’m curious ( and seeking affirmation I suppose…): How many of my FB friends have been through this trauma, either as clergy or as lay church members?  How did you responds?  Is it still affecting you today?

My hope is that as we begin to talk about this very serious issue, we will begin to find solutions. This epidemic has become as devastating to local churches and their ministers as the current pandemic is to our world. God help us! We have to find a way to stop it!!

Posted in Parkinson's Disease | Tagged , , , , , , , , , | 4 Comments



I have been ruminating on an issue that has affected me deeply in recent years. In fact, I have been working on this particular blog entry for more than two months! The advent of the Pandemic exacerbated the problem of no longer being able to speak. Even though the worst of the pandemic over, at least for now, I am haunted by the personal devastation that enforced isolation brought on us all. The isolation was akin to what happens to those of us with speech disabilities. We “Non-Verbals” are not magicians who can make ourselves disappear at will, but we certainly do “vanish” in the middle of a group when our voice can no longer be heard. Unfortunately, in this fast-paced world, non-verbals literally disappear, as conversation flows around them, often burying them in a ton of verbiage to which they cannot respond. Somehow, it no longer seems to matter that nonverbals are ordinary human beings..with coherent thoughts and feelings, personal histories, and stories to tell! Trust me! They desperately want to be part of the conversation!. Being speechless…a Non-verbal if you will…is a horrible, lonely, deadly fate that leaves the individual totally isolated, even though he/she may be there in plain sight. I know much about this, because until recently, that person was ME!

Before I go there, however, let me hasten to say that when I lived on the “normal’ side of existence, I was like most people:  uncomfortable when around someone who is disabled, particularly if that person could not speak clearly. I didn’t even realize that I was assuming that the afflicted person was not fully present. That the person’s  brain was  gradually failing to do its job in preserving personhood.  I’m ashamed to say, minister that I am, that it was all too easy to just pat the afflicted, non-verbal person on the back and then walk away (often too quickly).  

I am haunted by the memory of one particular incident when we were attending a reunion. A good friend and colleague from years gone by was tied into her wheel chair so she couldn’t fall out. To even see her face, I had to sit on a chair lower than hers, as her head, too heavy for weakened neck muscles to hold up, was bent permanently towards the floor. Her once-bright eyes were dull, the sparkle of life itself fading slowly away. I noticed nobody at the reunion had stayed beside her for more than a minute or so. I found myself sitting beside her, fumbling for things to say. The voice of this former singer had faded into a barely audible, flat-toned garble, and I struggled to understand what she had to say. I looked around the room at other reunion-comers, selfishly longing to get away to visit with others…to get away from what had become a very uncomfortable interaction….

Even though I knew, at that reunion, that I had been handed the exact same diagnosis as my wheelchair-bound friend, I was determined that I was never going to let  that happen to me!”  And so, I went blithely back to my life, still relatively untouched by the monstrous Parkinson’s diagnosis.  Still unable to acknowledge that I really am at the mercy of this Monster.

Fast forward to 2018.  I knew in the spring that my voice and diction were beginning to fade, my tongue tripping over some sounds as if English were a foreign language.   I went to several voice specialists, actually hoping that all their tests would show something wrong that they could fix.  To no avail…everything inside my face and neck looked absolutely normal!  I was sent to a voice specialist who also had advance degrees in music, very similar to my own training. The articulate speech that  I had relied on so heavily in my profession was slipping away. I was embarrassed, hating  the croaking sounds that issued from my throat. With no hope in sight, I gave up.

I was directing the choir that I had accompanied for years. In rehearsal, they could no longer hear me as I gave musical instruction.  What they could hear was a garbled mess.  They were all too kind to say anything, but the blank looks on their faces gave them away. I felt as if we were all descending into a chaotic world where no one was the leader anymore.  Frustrated and embarrassed, I stepped aside, thrusting the role of director onto my husband, who was already the accompanist for this fine choral group.

The isolation increased. In conversations, any attempts I made to enter into a discussion were not heard, and I was left in the verbal dust, my ideas wasting away in silence.  Virtually everyone quit calling me on the telephone.  Even my sister and best friend resorted more and more to texting.  Those who did make the effort to at least greet me, often turned my discomfiture on themselves with excuses about their aging hearing, dead hearing aid batteries,etc. But I knew the truth…I could no longer communicate audibly.

And so, I descended deeper into the chasm of isolation and loneliness…and invisibility…marginalized by the monster. Our society has done much to help handicapped people (I am very grateful for ramps in sidewalks, for motorized carts in stores, parking spaces near the door, etc.). But, I ruefully discovered, we as a society have done very little for the vocally handicapped!

Seven months ago, my neurologist, working with a Boston Scientific rep, tried a new way of programming my brain implant. Suddenly, without warning, I could speak almost normally!! The effects of the new programming were immediate, This was amazing, just as exciting for family and friends as for me. Some friends even called me on the phone, just to hear the miracle for themselves! I experienced anew the joy and comfort of long conversations with my spouse, of family phone calls, of telling anecdotes while at a dinner with friends…all things that I had taken for granted pre-PD Monister. Also, I experienced a strange form of survivor’s guilt….why was I given this has new chance to speak when so many other Parkinson’s patients are relegated to permanent silence?

Friends, forgive me if I stand on a proverbial soap box for a few minutes.  We have done so well in our accommodations for handicapped individuals…..let’s not overlook the very real problem of not being able to communicate verbally!   I tried various forms of voice enhancement, and discovered that at the very best, each device was more aggravation than help!  In fact the best accommodations  were offered by individuals who took the time to slow down and give extra time and attention to  an encounter with me.  These friends looked me directly in the eye to be certain they were communicating.  They did the intensely hard work of deciphering what I was trying to say. And failing these attempts, a hug (well, given the current pandemic, this could become a fist bump or pat on the shoulder!) was always welcome! Somehow, physical contact has become even more meaningful than ever!

Friends, forgive me when I speak forthrightly. Forgive me when I speak directly to injustices or say things that make folks uncomfortable. I need to make every word count these days, because the gift of communication, of speech, I can no longer take for granted!

Posted in Deep Brain Stimulation (DBS), Disabilities, Parkinson's Disease, Retirement | 1 Comment


Some months ago, I wrote a piece about what I can do.  It was written from growing despair as I realized increasing limitations as a Parkinson’s patient…the incessant, inexorable downward spiral as this beast continues to drag me into its clutches.  By focusing on the things that I could still do, I could talk myself out of the doldrums.

Since I wrote that particular a piece, there have been many months of isolation; time has slowed to a crawl as the virus and resultant quarantine, combined with increasingly garbled speech, have basically isolated me from everyone. It has now been a year since I’ve hugged my own children or even touched them! Longer than that since I’ve enjoyed a quiet morning drinking coffee with my sister besides her koi pond. She and I can no longer talk by telephone; my speech is unintelligible and my voice is too soft for her to understand me. And, there has been an inordinate amount of quiet, unstructured time to develop hyper–awareness of the devastation as Parkinson’s continues its rampage through my body. I have felt and seen the end of hope…

Three days ago, I experienced a miracle. The best way to tell you about it is to list the things I can do now that were impossible only three days ago.  (To begin to comprehend the miracle, imagine, if you will, the complete antithesis of each of these):

  • I can now walk almost normally, without my walker!  The cane has become merely a security crutch that I imagine will soon be parked in a dark corner somewhere.
  • I can write a legible note and do a crossword puzzle without my handwritten letters shriveling into a mangled, undecipherable mess – and I can think about what I’m trying to say instead of how to form each letter.
  • Keeping the car steady in the middle of the lane as I drive is now effortless…I almost missed this subtle, but still momentous change!
  • I can hum a recognizable tune as I putter around the house.
  • I can chat with my husband, speaking my thoughts only once, and he can understand what I’m saying!
  • I can speak for myself on the phone, make my own appointments, ask my own questions!
  • I can give Alexa a verbal command, and she can hear AND understand the first time, every time!
  • I can laugh and smile, make jokes…and my voice even has the proper inflection. 
  • I can enter into family or friends zoom meetings and actually be part of the conversations, teasing and bantering…and everyone can understand what I am saying!
  • I can play, at sight, intermediate piano music – for the first time in years!

The only problem with any of this is that my stamina is very limited.  But there is now a reason to look forward to rebuilding. You see, I have been given back some of my life!!

How, in God’s name, did this happen??  Has Parkinson’s been vanquished from my brain? Have I been…healed?!

The Rest of the Story

Six months ago, I had a final visit with my long-time neurologist. He was moving to Miami to become head of a movement disorders clinic.  It was a wonderful move for him, but I was bereft. I left that visit feeling as if I had probably gotten as much benefit from the DBS device in my brain as possible.  From there, I believed, the degenerative aspects of PD would again take over, ravaging what was left of my independence, leaving me invisible in my misery.   In other words, my implanted technology was maxed out, and I was again at the mercy of a relentless degenerative illness.

Three days ago, I went to see a new neurologist. Dr. Siddiqui is a specialist in movement disorders at Wake Forest Baptist. I had only met him once before. He was assisted by a Rep from Boston Scientific (the developers of my implanted brain device). The ensuing hour was spent with me hooked up to the computer as they quietly worked at the keyboard. Occasionally, he would stop and ask me to do some standard neurological testing, most of which I have done hundreds of times before. That day, I knew my coordination was worse than ever. And then, feeling as if someone had “oiled my joints,” the movements were suddenly easier, effortless, coordinated, normal! Mixed with utter surprise was a faint glimmer of hope as I learned that the Boston Scientific scientists did not stop working at the end of the 5-year timed trial. In fact, in the last six months, they have discovered and implemented a new programming technique. Using the already-implanted brain leads, they can see pictures of the brain and the program can predict probable best settings, customized for each individual’s issues!

Oh. My. Goodness!! It’s working!! My body is waking up! Activities that I never thought I would be able to do again are possibilities again. All day, I’ve been singing Amahl’s song just after his lame leg was healed: “Look, Mother! I can sing! I can dance! …” and from Pinoccio, “I’ve got no strings to hold me down. To make me fret or make me frown…”. Hope is tantalizing, and I am intoxicated with ideas of swimming again, playing the piano, walking a mile, talking with my friends for hours on end, playing with my grandkids…

No, this is not “healing” in the true sense of the word, because I still have Parkinson’s. But, as doctors and other scientists learn more about electricity and brain waves, the effects of this illness – it’s degenerative, destructive force – is diminishing. With each passing day, as I find more “little things” that I can do again. I am beginning to dream again about the future. Perhaps PD will not win. Hope is returning, alive and well, to get me through another month at least, and maybe a year. Or more!!

Posted in Parkinson's Disease | Tagged , | 9 Comments

20 20

Can anything positive be said about this past year?  We as a society have lost so many, so much; we are left in many ways, empty and alone.  There are some relevant things that we don’t often think about. Perhaps the most significant is understanding the humanness of the entire world.  I remember stories and pictures of far distant places and people wearing masks as oddly-named epidemics seemed to decimate a population.  These remote events were worlds away from my situation, and face masks were part of a foreign fashion and culture that were completely alien to me.   In short, I just didn’t relate to those foreign crises at all!  I have been able to go on my blithely-ignorant, white-privileged way, largely ignoring the rest of the world. Until now.

Enter Covid-19.  Months of isolation, a plethora of facemasks, and starvation for physical human contact have brought totally different perspectives.  We are all in this together, from the most isolated homeless individual to the richest socialite living in a lavish pent house.  When one sifts through the many possible layers of existence, at the core of any existence is a “basic” frail human being who can be attacked anytime by a tiny invisible germ than can literally bring said person to the edge of his/her existence. Social standing, titles, wealth, demeanor, personality, life style, charisma, religion, culture…they all mean absolutely nothing to this invader that seems hell-bent on destroying all life as we have known it.

So, here we are, in the midst of the most intense, ritualized holiday season of the year, and we are being told to set aside all family gatherings, all the trappings we tend to pin on this special season. It is excruciatingly painful to not hug the grandchildren, to not travel anywhere, to not have our traditional feast and party crammed into a favorite niece’s home.  

In our family, as in many families around the world, get-togethers are marked by sharing favorite recipes, by using heirloom china handed down from generations before us, by teasing, laughter, and telling well-rehearsed family stories.  All of these rituals remind us of who we are. To not have the rituals this year is unsettling and depressing. Trying to find acceptable substitutes is a seemingly impossible task. Many of us are afraid, frustrated, and angry with what feels like loss of identity. Certainly, we have all felt the loss of freedom to come and go as we please.

How in the world are we surviving?! Physical survival is in jeopardy if one contracts the virus. But the buoyant human spirit that keeps us going in the midst of adversity is also at risk.  Depression rears its ugly head more often these days, as we struggle with interminable hours at home alone, many of us with only ourselves for “company.” We are social beings! We need human contact to maintain sanity!!

All this brings a second thought:  the resiliency of the human spirit – the creativity that so often gets trampled as we stampede ahead – this aspect of being human that is often undervalued or discounted as “childish dreaming.”   There are strong, if subtle indications that creativity is alive and well.  Many of our ways of doing life have changed, and there are those who are adapting.  It took creativity to figure out the order-online / rapid-pick-up system.  Hopefully, curb side pickup will remain as a permanent part of our way of shopping.  “After this is all over,” my husband and I will still make it a point to carry our take-out food to some newly-discovered outdoor picnic locations for a few minutes of peace in the middle of our day.

I’ve given up trying to make these holidays “normal.”  Instead, I am trying to embrace some new ways to commemorate being human.  For example, our older son now calls us several times each week. I had not realized how hungry I am for the sound of his voice, his wry sense of humor, his gutsy laughter.  I love that techies have figured out new ways for us to see each other, even if we are miles apart!

There is no Christmas Tree in our house this year, but 25 years-worth of nutcrackers are on display, sporting face masks, protesting the invisible invasion with their silent decorum.  Gifts are being opened early, with some surprising developments. Our younger son and his family came for Christmas more than a week ago. We ate and opened gifts around the outdoor firepit. The expressions of delight as each one focused on the single gifts for the day gave me time to savor the joy of choosing specific gifts that would please each person.  How often have we rushed through mountains of gifts, all in one Christmas morning frenzy, and missed this savoring?

So, what’s the point?  Although Covic-19 is a major imposition on our life style, a threat to our very existence, all is not lost. Perhaps as we each dig deeper into ourselves, as we are wrapped in the cocoon of a restricted existence, we will become more sensitive to our neighbors, more appreciative of life itself, and maybe, transform into a better existence because of the disasters of this year.

Okay! I admit it! I am weary with trying to make this work.  It’s exhausting, but absolutely necessary, to keep hunting for the positives, else we lose our minds and souls!  So, with a reluctantly grateful heart, I wish each reader a blessed, Merry Christmas!  Be at peace.  We will see each other soon!

Posted in Parkinson's Disease | Tagged , , | Leave a comment

Giving Thanks in 2020

It’s Thanksgiving. Normally, we are on our way to a relatives home where a major feast is underway. There is laughter, share memories, family stories, coffee, hugs and snuggles…..much like your celebrations, I’m sure. This day in 2020, much like the rest of 2020, is different. For months, we all have been in suspended animation, hiding from each other, and strangers, and germs. Add our own retirement to that, and our lives are tremendously from a year ago.

However, some amazing blessings have come our way in these months. We have a new grandson, Rafael Lucas Spencer. Thanks to frugal parents, we were left with enough inheritance to purchase a new RV. Thanks to the professionalism and expertise of our legal team, at Abrams, Landau Ltd. in Herndon, VA, we were able to settle from a frightening car crash…and now have a Ford F-150 to tow our RV. How interesting that the most recommended form of travel during these pandemic days is the very one we have dreamed of for years. And how odd that the means and necesssary time arrived in tandem! And these are just the “major” things.

Everything else pales, though, when I really sit down to count my blessings. I am so very thankful for this man who has been husband to me for nearly 43. Years. I love what he is figuring out about retirement. I love that our goal for this day is to communicate with those we love, and fix our very own Thanksgiving feast together. We will eat by candlelight this evening on antique china that was given to my parents for their marriage in July, 1949.

I’m thankful for a sister who is also my best friend. I’m grateful for four brothers, my nieces and nephews and their spouses, for sons who remain close, even though we live miles apart. Expanding outward are our church, a school job that I dearly loved, the myriad of friends we have made over the years. Many of you still keep in touch.

All of a sudden my mind is going crazy, flooding with all the blessings that are part and parcel of living in 2020 – everything from the birds singing and chowing down at the three feeders that Ed refilled yesterday, to the internet with its amazing possibilities, to our home, and neighbors, and stores who have figured out a system for shopping that keeps us both well-stocked and safe. And on and on and on…

This is a great time to be alive! And, it’s a great time to sit quietly, before we return to our helter -skelter lives, and reflect on just how blessed we really are. Happy Thanksgiving!

Posted in Parkinson's Disease | Tagged , , | 1 Comment


I can’t believe it’s been nearly 9 months since I wrote a post for this blog! It feels like we’ve been in suspended animation. When I was a child, I was haunted by a movie in which sensory deprivation was used as a form of torture. I believe we have all been experiencing a bit of this as we have isolated ourselves from each other. No touching, definitely no hugging. No visible twinkle in a friend’s eye; no raised eyebrows, cocked with understanding. No random conversation, no club meetings. No direct information sharing. I was horrified to learn one of my best friends unexpectedly lost her son. Even more devastating was that our isolation was so severe, I didn’t even learn of this young man’s death until two months after he was gone?

Another friend couldn’t get in to visit with her Mom in an assisted living facility. An iconic picture of them, elderly Mom inside a window, and daughter standing outside remains a chilling reminder of 2020. Even more devastating was knowing that when that elderly Mom lost a dearly beloved sister, she couldn’t attend any of the family rituals we share on those occasions. Nor could we celebrate the life of this same Mom when she passed a few weeks ago…and this story can/is repeated.. .lived!…by hundreds of thousands of other families. Yes, This is AWFUL!!!

So where does this “After Glow” come from? Is it possible to find hope amid the current crises? How does one remain positive in the face of a very real global pandemic, coupled with looking at the seamy under-belly of a nation that seems to have gone awry? How do we move beyond the seeming negative odds we face? Will our communities ever be the same again? Will we be able to trust each other again after the worst is over?

Allow me, if you will, to share a very personal journey. A long journey which has taught many lessons. If you know me at all, you probably have been part of the journey, and most likely, I am very grateful for the role you have played. So, thank you ahead of time, for “being there.” For being “God in the flesh” time and time again for us. Because of you, afterglow is not only possible, it is real!

This journey began when I was nine, at a girls’ camp in the mountains of East Tennessee. That camp yielded the first clues I had that I was to have a special “mission” in life – one that was involved in service to others. I was too young to understand this as a proverbial call into the ministry. Nor did I understand that God’s claim was to be ever-present, ever-demanding, ever-rewarding … a life-changing, on-going event that would literally carry me into senior citizenship and beyond!!

The ensuing years have yielded, time and again without fail, the affirmations a minister needs to survive. With no exceptions, someone has always arrived on the scene with just what we needed. These “God in the flesh” moments were always reminders of our humanity, of our need for community, for relationship,

Now, at the other end of that “career,” we are children again, seeking to know who we are to be in a society that is changing more rapidly than we can comprehend. Retirement is one of our sacred dreams in America – the dream of being free from the demands of a career, of being independently wealthy, having no responsibilities to anyone, of being completely free to come and go as one wishes. Yet, when one actually hits the retirement wall, there are “ hidden” parts of the dream that are often glossed over. All those years spent thinking “Someday I will..” or “I’ll save this for a rainy day…”. or “when I get old I will…” Retirement brings with it the reality that someday is here, and it’s raining! And guess what! You are now old!! (It’s no wonder that some folks have heart attacks and die at this stage of development!)

So, what about this “after glow” thing? Our sacred rituals have been ripped away from us in recent months. In our culture, as in most places, we gather in groups when we celebrate and also when we mourn. We create a sense of belonging in these gatherings, which carries us beyond the event with warm memories and assurances that all is well – this is what I call “After Glow.

Americans have been seemingly hell bent on keeping our rituals, gathering in large groups for weddings, funerals, beach parties on holidays, etc. In so doing, we have jeopardized the existence of many loved ones. It’s no surprise that we now rank #1 in the world in Covid-19 cases and deaths! Sometimes I wonder if we are more afraid of loss of the sense of belonging than we are of death itself!

Yet, some of the more creative thinkers in our society have or are developing ways to be together, to create a sense of community, while still helping us keep “socially distant”. And that brings me to the most important realization of the journey! My husband and I recently retired after more than 43 years in the ministry. The journey to this point took us through many local churches, many different roles within the local community: from private music studios to the public school classroom, from choral music director to the organ benches of at least 7 different denominational churches. It’s been sort of a patch work quilt of a career, and we are tired! We set the retirement date several times, and in the end, we delayed it for several extra months, hoping to get “back to normal” after the pandemic restrictions. When we finally gave up, realizing that “normal”is still months, if not years away, we set a final date, figuring we would just fade away into the abyss, with little celebration, no fanfare. But our friends had other ideas! Our last day was marked by a parade of cars that slowly drove by, each one stopping to wish us well, some with signs, balloons, flowers, music, homemade cobbler, homemade gifts. Others sent cards and gifts via the mail. A different sort of celebration, but one that has left us with that afterglow of warmth, knowing that we are loved and won’t be soon-forgotten!

So, where does this after glow come from? Where can we find hope when all around seems dark and jumbled? Simply put, we have seen over and over that God loves us. To me, it was no accident that the events of our lives have dovetailed with the gifts of those around us. God said that we will not be left comfortless. God is with us, redeeming the worst that life has to offer, leading us through the darkest days. I’ve been there. I’ve felt the presence of a Loving Entity, larger than life itself, and I live in the After Glow!

Drive Bye Farewell , August 30, 2020
Thanks for the Music!
Posted in Parkinson's Disease | Tagged , , , | 2 Comments

Finger Prints

Continue reading

Posted in Parkinson's Disease | Leave a comment

Making Family

Complete Rodgers Clan, Dec. 2018I have lived a lifetime in just the last week. I’ve stood by my elderly mother‘s deathbed, keeping vigil as she drew her last breath. My siblings and I have mourned Mom’s passing, celebrated her life, and sorted through her most special treasures. After weeks away, I have finally returned to my own home, to my own life, to try and figure out how to incorporate some of Mom’s treasures into my own!

As we dug ever more deeply into Mom’s life, we discovered things about her and our Dad that we never knew. By the time any of us was old enough to remember, Mom had run into enough limits that she carried a resentment that would hurt her, diminishing her throughout the rest of her life. I often hid during Mom’s tirades, as did several of my siblings (amazing what one learns during a death vigil!). We each knew to challenge Mom with great caution…the price for implying that she might have made a mistake was always unpleasant, even caustic…often not worth the battle!

But these things we already knew. The real surprises were revealed in old photographs, notes, and letters that none of us realized even existed! There were pictures of young adult George and Louise. They loved being together!   They loved each other!  (None of us ever saw that side of their relationship. Instead, we all have hard memories of bitter words …)

I have long been aware that my love of books and writing was inherited from my Dad. He was an incurable bookworm. Our weekly trek to the public library is one of my favorite childhood memories. The surprise was finding the beautiful notes he wrote to the love of his life, and realizing Mom kept them!! Who knew that Dad was such a romantic? Or that Mom was so sentimental? Mother, following the example of her mother, left notes on many of her treasures. We had errantly assumed that many of her  “doodads” would be easy to toss. They were Mom’s memories, after all, not ours. But those small hand-written notes, taped to backs and bottoms, or stuffed inside some orifice…those notes tied us to generations past with old, long-forgotten family stories. Those notes are largely to blame for the many extra boxes of stuff that have found new homes with my siblings and me after the funeral!

So, here I am, at the time of life when I need to be getting rid of things, adding more to my domain and existence instead! As I began to unwrap my “new” treasures, I pulled out a large empty box and began filling it with stuff we no longer use or need. And, I realized that I am falling down on the job! There are a myriad of items in my home that hold wonderful family stories. I need to add my own note to some treasures, telling the stories that go with the memories. My notes are an important of the family narrative too!

The evening of the day Mom died, my siblings and I met together in a nearly empty apartment where Mother had lived happily for more than 7 years. For days and days, we had each picked through Mom’s treasures, sorting, donating, and then, choosing our favorite items…and our ability to make further decisions was exhausted. A few precious heirlooms were relegated to an “Everybody Want This” corner. Numbers were put into Keith’s favorite hat, and we pulled numbers for each item we wanted…until all was parceled out, each sibling with a few very special treasures. There were no arguments…just laughter and tears, stories and agreements about who should really have certain items.

In the last days before Mom died, it seemed as if the soul had gone out of that place:  Mom’s bright eyes and always warm (sometimes teary) greeting and embrace were gone, the shell of her body wasting away in an adjacent room. The light and life we knew as “Mom” was gone as the previous generation ended and I became the eldest female in our immediate family. It is an odd place for me to be to be  – a supposed matriarch for this family!  I am quite certain I am not ready for nor do I really want this “auspicious” role.  But I know most of the family stories…and I know it is the stories that help us make family. Sharing the memories that tie us together helps keep us together as family!

Three of Mom’s grandchildren sat around the perimeter of her nearly vacant apartment on that evening only a few hours after Mom’ death. They didn’t gather there  in order to get something. Rather, they came to hear the stories we told about the treasures. These special young ones got it right!  The Essence of Family! It’s not the stuff, the tangible things, but rather the relationships that are reinforced every time we share a meal, make a memory or tell a story reliving family legend. The soul that Mom brought to that special place is very much alive in each of her children and grandchildren.  So, we will continue to tell the stories, aware of our foibles and follies, as well as the unique strengths that are part and parcel of the “Rodgers Clan”.  We are making family as surely as did our parents and grandparents and all the ancestors before who brought us to this place and this time.




Posted in Parkinson's Disease | Leave a comment


What a strange week this has been at the Spencer home. We knew for several months that this was coming, and put it off as long as we humanely could. Last Tuesday evening, we said goodbye to our dearly beloved pet, Kelsey. She was a German Shepard mix whom we found at a pet adoption agency in Greensboro in late 2003. She came to live with us on January 5, 2004. Kelsey was so smart, so sensitive to her new “Owners” needs that she immediately adopted us, blending into the household and family as if she had always been there.



Kelsey grabbed hold of my heart from the first picture I saw on the Internet. She waited for me patiently each day as I went off to teach school. She greeted me with joyful abandon when I returned. We played together (she knew all the “tricks” and eagerly learned more), walked and camped together. She slept on the floor by my side as I worked on lesson plans or colored or crafted teddy bears.

She knew her job as my protector, resting with her back toward the door of whatever room I worked in, on alert for any threats.   She alerted incessantly to doorbells on the TV, strangers on the street, imagined sounds in the dark outside at night.   She let me cry into her soft fur on those days when Parkinson’s seemed to be winning. Kelsey was such rich company for me! She even blew out her knees and had surgery on each of them– both of her surgeries happened immediately after I had my own major surgeries! Even at the very end of her long life, as the vet pumped blessed relief into her veins, she stretched up to lick the tears from my face. But perhaps her greatest accomplishment was winning Ed’s heart! “I’m not a dog person,” he avows, “but Kelsey made me a Kelsey person!”


So, my house is a good bit emptier than it was. For more than 15 years, we were graced with the presence of this Gift we called “Kelsey.” I am humbled by her commitment to each of us, by her awareness of our needs, by her patience and understanding when we were not at our best. I can only hope to be as good a friend.

Thanks, Kelsey. Godspeed.

Godspeed, Kelsey

Posted in Parkinson's Disease | 4 Comments

The Organist

Dr. Mueller was my organ performance professor for 4 years in the early 90’s. He taught me to make Bach’s music dance, to soar with the elegant beauty of Mendelssohn’s melodies, to engineer the compositions of Cesar Franc so that my small hands could perform the music of this giant of a musician who also had very large hands! I learned so much from him, but perhaps the most important came in the green room just before my final one hour recital: “You have done the work. You know the music well. Now, go out there and have fun! Don’t try to play every note perfectly. Love your audience!”

To play the organ well takes incredible amounts of practice time, extensive training, and muscle memory that won’t quit! Thanks to John Mueller, I learned to play with abandon, to live the music, to love the audience. The organ bench became my sacred place, where I could bare my soul before God, praying without words, expressing feelings far deeper than words could say. I am ever so grateful for the 18+ years I was able to play after Dr. mueller’s teaching. I am grateful for the voice of the pipes in so many churches. Perhaps the instrument seems outmoded today, but I believe it still is the King of Instruments, and those who are blessed enough to play it well are Gifts to all who hear. Thanks, Dr. John Mueller.

Posted in Parkinson's Disease | Leave a comment